I've seen a rep from this company speak and it sounds good - however, it was
found that the company totally falsified test data and the man that runs the
company has gotten in trouble in the past with other unrelated ventures. I'd
be hesitant to use their products.
Diana vock
The NIDS protocol is a medical treatment based upon abnormal lab tests, a
history, and a physical. Kathy R
Interpreting blood work is within my scope of practice but it would be
irresponsible of anyone to interpret blood work without a history and a
physical. Isolated values do not have much value. In the NIDS protocol you
are looking for trends but again they have to be looked at in light of a
history and physical. Doing anything less than that is short changing your
child. Kathy R
I've been talking with an experienced nutritionist and he's telling
me
that Ambrotose from Mannetech is almost the exact same concept as Dr.
G's protocol. It's an immune system "healer". I've been trying it on
my son. I can see little things but who knows. Maybe I'm just wanting
to see something that's not really happening. Does anybody else have
any knowledge about this product. I haven't gotten on Dr. G's
protocol
yet and thought I'd try this first.
Thanks for your advise.
Diane B., mother of Taryn
I'm slowly getting the blood work-up done for my son. Now I don't
have
a clue what they mean. Here goes;
Folate..................8.2
Vitamin B-12............203
ANA Screen..............Negative at <1:80
EBV VCA IGG.............Positive H (retest in 7-14 days)
EBV VCA IGM.........Pending
EBNA................Pending
EBV Interpret.......Pending
Cytomegvr...............Pending
Cytomevr IGM............Negative
Ferritin................34
uTSH....................1.88
T4 Free.................1.30
Glucose.................78
Triglyceride............108
Cholesterol.............171
Sed Rate................13 High
Lead....................<3.0
Can anyone tell me what this all means? Please put in potatoe head
language.:0) Thanks for your help.
Diane Brayman, Mother of Taryn 6yrs
I can sympathize. My advice is to keep looking around until you find an
open-minded pediatrician. We have an appointment on Monday with our third
pediatrician in one year. We took our son for an initial visit and have now
scheduled an appointment without our son being there. Both my husband and I
will go. I think what you need to try and do is explain how frustrated you
are with the lack of answers you've gotten in the past and that you don't
expect your primary care dr. to have all the answers. All we are looking for
as parents is someone who is willing to help us look for answers. The minute
I hear a doctor say someone or some theory is quackery, I see a person
without sympathy or understanding. The physician we have now admitted the
first time we saw him that he knew very little about autism. I respected his
candor. I'll let everyone know how this next visit goes. But I'm not
discouraged. I'm determined to keep looking. I owe my child nothing less.
Linda
There are some people who think that maternal antibodies are a factor
prenatally. However, the issue is an immune system that does not function
correctly. Logically it would talk more than one trigger to cause autism. The
issue is more of which cytokines are not doing their job. Since there are
degrees in the autistic spectrum ranging from ADD to children who are
severely disabled and most viruses are in the environment a good deal of the
time one can see the issue is one of defenses missing rather than the
strength of the attacker. Kathy R
Hi all! I am in the process of getting the blood work done to see
Dr. Goldberg, and I just got the results from the first round of
testing for my 3 kids with autism. My oldest is 6yr and his
mononucleosis test came back positive. I don't remember him having
it. Since our twins with autism (2yr old) didn't come back positive
I would think that he had it before they were born. Is it possible
that this could have triggered the autism? He changed around 2yr
old. He always complains of being tired. If anyone has some
thoughts I would love to hear them. His Epstein Barr came back
negative. Perhaps this doesn't mean anything, but that he has had
mononucleosis.
Thanks,
Mayme
Autism aside...there are plenty of reasons not to vaccinate. Look into the
ingredients of each vaccination. If your pediatrician can't tell you whats in
them shouldn't that be a reason for concern? Look at the death rate from the
diseases prior to the introduction of vaccines...they were dropping at the same
rate as after the vaccines. I would wager that the most severe cases of the
childhood diseases (mainly death) are at a ratio far far less than the chances
for "contracting" autism.
I am sure there are plenty parents locally who would love to have your daughter
as a playmate for their own NT children. Contact your local ASA chapter...
Eric
NIDS friends,
Does anyone know of a NIDS-friendly pediatrician, allergist or neurologist in
the Detroit or Ann Arbor, Mich., area--one who would be willing to write
orders for the NIDS protocol, particularly the labor-intensive initial blood
work? My niece, though not diagnosed on the spectrum, has some issues that
look to be the kinds of things that a NIDS approach might help with, but her
pediatrician dismisses all of Goldberg's theories as quackery, and won't
write orders for the workup.
Any leads would be greatly appreciated. Thanks.
Warren Anderson
Sometimes Dr. G comes to the Carolina's that is where we saw him. Just
call his office to find out when and have the blood work done and ready
by the time he gets here
Mercy
Someone out there please help me. I believe that my child would
benefit from the NIDS protocol. However we live in N.C. and a trip to CA or
NY or the SouthWest is not an option. Does anyone see the possibility in the
future of a physician list of Doc.s who use this as a treatment. Will the
NIDS protocol be published in detailed form so that physicians around the
country can help all children ( the web site is not enough to spread the
word). I don't want to ruffle feathers but I've never had these questions
answered by reading this list.
JOAN
Any one who would like information on doing a fundraiser, please email me at
denisemacri@...
Again the list is for everyone but how can you follow the discussions of how
a child is doing on the NIDS protocol if you have not read it! We are trying
to make sure that everyone understands that the NIDS protocol is a unique
medical treatment that is scientifically based and makes children better!
Neuroimmunedr.com! Kathy R
Hi. I would like to know when it is a "good" time to vaccinate. I have a 17
month old daughter who still has not gotten her MMR shot. I found a doctor
who is open-minded about not vaccinating her but I always seem to doubt
myself especially when I see all other moms joining "MOMMY and Me". I feel
like she is missing out because of her autistic brother. Please bare with me,
I am at a point where I want to burst out of this bubble so I can show my
daughter other things besides her brother's in-home ABA program. We are both
prisoners!! AAH!!! Sorry!! Michelle P.S. I was thinking about just getting
the measles shot this year. Please, any advice is appreciated!
Hi all,
I went to the egroup site and it states this egroup is for families that are
affected by NIDS. Some people join to get information before they decide to
do the NIDS protocol. This site has been a great source of information for
families that are not familiar with NIDS and the medical protocol.
Can the list owner state his or hers views. Thank you, Rosemrie
Gee,
After being in this group for over a year it looks like I am in the
wrong place also!!!
To this person who wrote the above message" How rude" .. I now don't
want to belong to this group also.,. So how do i unsub from here...
Sharron
A parent of a VACCINE DAMAGE CHILD..
You are a very nice person for not letting the air out of the tires! I would
have been tempted! Kathy r
On Monday we went down for our check-up with Dr. G. After we were all
finished, we headed down to the parking garage to leave. Some of you are
familiar with the set-up, but I'll explain briefly. Behind the elevators
they have single parking spots that are longer than others. There are three
spots that are for compacts and the one closest to the end wall is for full
size cars. It is also a little longer than the others, but still only meant
for single parking. When I pulled in, I went a little further in and left
about half a parking space behind me.
So anyhow, when we make it to the car, I can't believe what I see. There is
a little white Pontiac grand am parked behind me. Not only are they behind
me, but the car is actually resting against the back of my car. Of course
there is nothing that the garage can do, so I wait and I wait. In the
meantime someone pulls out of the parking spot, two cars down. Since there
is room in front of all the cars, I am trying to decide if there is anyway I
can manuever my car and get turned around without running over the cement
barriers, or hitting one of the cars. The car next to me happens to be a
full size brand new Mercedes, who is parked a little over the line towards
the empty compact spot. On the other side of the empty parking spot is a
cement pillar.
At this point I have now been stuck there for around 45 mins and I am pretty
upset at this point. I have several hours on the road to face and things
that I needed to do. I try for awhile but I have a full size car and I was
afraid of not only damaging my car, but also that brand new mercedes.
Finally the parking attendant comes back down. With his help, I was able to
squeeze through with only inches of manuevering room on either side.
Whoever that person was, they should be thankful that they didn't show up
after trapping me for an hour.
So I'm finally free and should be home in a couple of hours, NOT. Since it
is now an hour later, I am welcomed on the Interstate with rushhour traffic.
I finally get out of the valley and I figure it's smooth sailing the rest of
the way, NOT. I had about 20mins of smooth sailing, then all of a sudden
the traffic comes to a stop. The next 30 mins are spent traveling at
0-5mph. It turns out that there was about 4 semi's that had a chain
reaction accident. I finally get home about two hours later than planned, a
little after 7p.m.
What a wonderful time I had. :( I thought I would share my experience so
that maybe this never happens to someone else (and also to vent) BEWARE,
there are idiots out there that will squeeze behind you if you leave space
for half a car.
Cheryl
Dear Noelle
There is an excellent book called "Unraveling the mystery of Autism" by
Karen Seroussi (Serroussi?). Did you know that it takes the body 9
months to get red of gluten? Some children takes them a year to get rid
of milk from their system.
One way to find out if it is working is by introducing the no no food
one at a time at a four day interval. (milk takes 10 day to be out of
the system).
Another good book to read "Is this my child" by Dorris Rapp.
Good luck
mercy
Dear Catherine
Welcome too the group!
mercy
Yvonne,
I'm going to respond on the list because I have had a number of requests and
I really don't have the time to do a lot individually. I am extremely
concerned about the amount of nonscientific information that is on the list
right now. The body is logical and if you approach it with that in mind all
of this will make sense.
First, I know that you have read everything by Dr. G and the NIDS board and
that your daughter is under his protocol. If anyone is reading this has not
done that you can do what I suggest but it is a piecemeal approach that I
absolutely do not recommend. Everything in the NIDS protocol is there for a
reason and substitutions do not work. If they did they would be part of the
protocol. OK let's start with the basic philosophy. We want to cool the
immune system down so we want to remove everything from the child's
environment that might stimulate it. Let us totally dispense with the word
allergy before we start. When you are dealing with someone who has an erratic
immune system allergy testing, which by definition only tests for IgE, may or
may not be accurate. The first environment that we will clean up is your
child's bedroom because she presumably sleeps there (when she actually
sleeps)! The issue here is dust mites. Cover her mattress with a mite proof
mattress cover which you can get in some department stores or on the web.
Cover the pillow. I found pillow covers at our commissary so they must be all
over. Wash her sheets weekly and her covers every 10 days. They both must go
in a hot dryer for at least 10 minutes after each washing. Stuffed animals. I
would minimize them if possible but those that go in the bed should be washed
every 10 days (you can put them in a pillow case in the machine) or frozen
(please put them in a plastic bag first) for three days every 10 days. Both
heat and extreme cold will kill the mites. What is the floor covering? If it
is carpet and it cannot be removed you can get miticide and use it every 6
months. You take all of the furniture out of the room sprinkle it on, brush
it in, let it dry for 5-6 hours and vacuum it up. You must use a mask, gloves
and I wrap plastic bags around my slippers. The windows must be open for
ventilation and the door closed from the rest of the house. Dispose of
everything safely. In terms of the environment I am totally against this but
I realize some people have to live with carpeting in the bedroom. For floor
damp mop and dust every day. The biggest source of dust mites are stuffed
things and fabric. Natural fabric is more conducive to mite life than
synthetic. But synthetic outgasses so there's the choice. Curtains should be
removed or laundered frequently. The whole point is to remove the
condominiums where dust mites can live and breed. If they are not in the room
they will not come out at night and crawl all over your child's body eating
her dead skin flakes and defecating. They do this to all of us but if you
don't have a sensitive immune system it is not a problem! Keep the windows
shut to keep pollen out or use filtered screens. If you have an air
conditioner you have to make sure it does not get mold in it. If you have a
system you have to get your ducts cleaned out periodically. If you have a
humidifier you have to clean it every day or it is a great source of mold. OK
that's enough for today! Now send my questions so that I am sure I am being
clear. This is a lot of work initially. But after a while it is not. If your
child reacts to dust mites then you have removed an irritant. The immune
system should be a little more calm! Kathy R
We have been on the diet for about 3 months and can't see that it is
doing anything. Have any of you tried the diet? How long do you
need to do it? How do you measure the results? Thanks, Noelle
Kathy R
I'd be interested to know what types of allergens are in the home, and what
can be done about it. You can e-mail me privatley if you wish. Thanks you
Charles
and gluten free diet. We did skin testin and found that Colin is allergic to
milk so that part was easy. In order to justify taking him off gluten as well,
we participated in Dr. Cades study down at the university of Florida where you
pay 64 dollars and they run the test for you. Colin's casein was 3,100 and
normal was up to 100 and his gluten was 1800 with the same normal values. I
know that if you eosinophil are high and remain high while on the diet, Dr. G
recommends a certain type of allergy testing. Really, we saw the most
improvements while taking out the milk /dairy in his diet. The improvements,
even though suttle, if help Colin at all and his immune system, it is worth it!!
Hope this helps!...Kathy
What allergens did you remove from your home? Thank you for taking the time
to be of help.
Isoaa.
Kathy - I'm interested in hearing more about allergens in the home. You can
e-mail me privately.
Thanks,
Yvonne
Connie,
When I was stationed at Ft. Meade I worked with a number of families whose
children were fighting cancer. I had one little three year old whose mother
would have climbed Mt. Everest if it would have helped her child but despite
a BK amputation and aggressive therapy we were losing the battle. A month
before the child died her mother was hospitalized for two weeks with
chickenpox. That was two weeks that she was unable to be with her dying
child. Now where did she get the chickenpox? Anywhere! I could stand in the
door of the Px or the commissary during chickenpox season and count the kids
who were too sick to be in school but well enough to go shopping.
Unfortunately it has been my experience that some parents do not let a highly
contagious communicable disease interfere with their lives. The fact that
other people might have compromised immune systems just does not occur to
them. You would keep your children home but not everyone does! Our clinic
has a hallway where we can isolate individuals with potentially communicable
diseases but not everyone has an extra waiting area they can designate for
that purpose. The other problem is that some illnesses are infectious before
a parent realizes what their child has. Some children have such mild cases
that their parents can be fooled for a day or two but they are still
infectious. When it comes to communicable disease a health care practitioner
can probably institute any policies that they deem appropriate to protect the
public health. Kathy r
Please go to Dr. G's website and you will read about the immunemodulators
that we are all waiting for. There are a number of letters in the conference
area having to do with Peptide-T. Dr. G's answers will give you all of the
information on that particular immunemodulator. Kathy
Yvonne, One of the things that I did before I retired from the military was
to work with families to help them reduce the allergens in their home for
their asthmatic/ADHD kids. We were very successful with the children whose
parents made the changes. I removed allergens from our home when Cindy was 4
and the change in her was dramatic. I am convinced that she would not have
regained her language (such as it was) if I had not done so. I'll be glad to
work on this with you if you would like. Kathy R
Erica,
You are saying, in your excellent letter, exactly what the NIDS people are
saying. All they can do is treat the medical problem the rehabilitation part
is up to us. For many parents that is the biggest challenge. I would very
much like your input for our parents handbook in the areas of rehabilitation.
would you be willing to help? Kathy R
I was informed by a physician in my pediatrician's office yesterday that the
office was implementing a policy of not allowing any children in the
practice who were not current on their vaccinations. This floored me, as we
have a medical exemption for my sons from our DAN doctor in another state.
The rationale used to explain it to me was that other parents had complained
that their children (presumably babies, not fully vaccinated) would "catch
something" from the un-vaccinated children. I thought this was ludicrous,
as my children are not walking carriers of the diseases being vaccinated
against, and if they were sick from the disease, I would certainly know
about it, and would quarantine them.
Can they do this to us?
Connie
Thank you for the thoughtfulness you showed in sharing this story. It made
my day. I have always believed that special children are the teachers and
were are nothing but humble students. Linda
Hi guys! I got this e-mail today, and I'm sure like me, most of you haven't
really spent a lot of time questioning the "why's" so much as spending the
time questioning what we need to do to help each of of our kids, but I
thought this was a sweet story, and wanted to share! Hope you don't mind.
-Jill
Hi All,
Oh boy am I happy today!!! Mike's surgery went just fine and we are back at
home letting him recover.
I also am back from my trip to warm springs that I took on Monday and Tuesday, I
went to a youth leadership forum, that taught teenagers and young adults with
disabilities to be disability advocates for tomorrow. I met a lot of wonderful
people and made some great contacts.!! I had a blast!
The center I work my project through is called disABILITY Link, I got a chance
while in warm springs to sit down with our director and talk for a while, he is
going to make the money available so I can go next month and do my fibromyalgia
instructor training, and also (this is so exciting), he is going to contract me
out to do the newsletter for them and their web site!!!!!!!! I am so thrilled
that all of my hard work (which I gladly do for free) is going to pay off!!!! I
can't believe I actually have a career!!! YAYAYAYAYAY. I know for sure now that
disability rights movement is my calling in life and what I want to do, I am so
passionate about it and love every minute that I am talking with the kids or
helping people!!! It's so rewarding!!!
Hope you all are having a blessed day!!!!
Thanks,
Angelique
FCRG- FMS/CFIDS Resources of Georgia
http://fcrg.bizhosting.com/
AOL Instant Messenger - Lexi2775
Erika, thanks for your strong, honest reply! My son is 4 and he had all the
tests done that his DAN nutritionist wanted done. His casein was high, his
gluten was within range. He has very slight yeast and slight
malabsorbtion-not a leaky gut. I would like to know if there is a specific
test for fungus. I would like to see him but I know the 6 hour flight will
kill him. Did you see him or did you get the bloodwork done through his
protocol and then saw him? My son is rarely sick, and he is really responding
to his diet as well as ABA. I never heard of levels of ABA- where d o you
live? As far as the rest of his bloodwork, everything seemed pretty much
normal-I still want to do his protocol. The nutritionist feels that he would
like to treat it nutritionally first. I agree, but I will give it 2 more
months. We are only on this diet and ABA for 2 months. What helps his
triglycerides? What is the HV6 titer and how do you treat that? Sorry for so
many questions,but as soon as I feel confident, there is something new that
needs to be inspected! Congratulations on your child's improvement!!!!!
Kathy, peptide T test? Sorry, I did all of the tests, is this something new?
Thanks, Michelle
Ann, what info did Kathy give you and what is this Database and peptide T?
Thanks for any info!Michelle
Erika - It's interesting that you mentioned the dilated pupils, because
sometimes my daughter;s pupils are HUGE! It's kind of creepy - what causes
this?
Yvonne
Thanks Kathy - I don't know what's going on with my daughter, honestly. Every
day there are so many variables - amount of sleep, pollen (as you mentioned),
foods she ate and their ingredients (nitrites, sugar, food color), the work
she's given, how she feels, etc., etc. How can you know what's taking place?
We're sticking with Goldberg because he's the only one who gives us hope,
especially with our case of regressive autism, but sometimes I feel like I'm
being taken for a ride. I hope not.. Thanks for the positive input!
Yvonne
If your congressman, or any congressman from your state, is not on the list
below - please please please see to it that he or she or they are added
soon!
The passing of this resolution for this stamp is up to us. No one but us -
How bad do we want an Autism Awareness Stamp?
It's up to us!!
Please pass this and the sample letter from Unlocking Autism to as many
lists as you can - to as many relatives in different states as you can......
anyone touched by autism who might simply take 2 minutes and send off a
letter to their congressman for this much needed stamp.....
Thank you,
Michelle Guppy
Rep Vitter, David - 4/5/2000
Rep John, Christopher - 4/5/2000
Rep Kasich, John R. - 4/5/2000
Rep Moran, James P. - 4/5/2000
Rep Frost, Martin - 4/5/2000
Rep Kelly, Sue W. - 4/6/2000
Rep LaFalce, John J. - 4/6/2000
Rep Weldon, Dave - 4/6/2000
Rep Rangel, Charles B. - 4/6/2000
Rep Franks, Bob - 4/13/2000
Rep McCrery, Jim - 4/13/2000
Rep Meehan, Martin T. - 4/13/2000
Rep Smith, Christopher H. - 4/13/2000
Rep Rahall, Nick J., II - 5/4/2000
Rep Hooley, Darlene - 5/4/2000
Rep Tierney, John F. - 5/11/2000
Rep Petri, Thomas E. - 5/11/2000
Rep McNulty, Michael R. - 5/23/2000
Rep Barrett, Thomas M. - 6/7/2000
Rep King, Peter T. - 6/7/2000
Rep Price, David E. - 6/7/2000
Rep Wolf, Frank R. - 6/7/2000
Rep Gejdenson, Sam - 6/7/2000
Rep Green, Mark - 6/7/2000
Rep Forbes, Michael P. - 6/14/2000
Rep Latham, Tom - 6/14/2000
Rep Jefferson, William J. - 6/15/2000
Rep Payne, Donald M. - 6/15/2000
Rep Blagojevich, Rod R. - 6/15/2000
Rep Kolbe, Jim - 6/20/2000
Rep Gonzalez, Charles A. - 6/20/2000
Rep Capps, Lois - 6/20/2000
Rep Romero-Barcelo, Carlos A. - 6/20/2000
Rep Morella, Constance A. - 6/20/2000
Rep Horn, Stephen - 6/20/2000
Rep Hinchey, Maurice D. - 6/20/2000
Rep Kilpatrick, Carolyn C. - 6/20/2000
Rep Knollenberg, Joe - 6/20/2000
Rep Levin, Sander M. - 6/20/2000
Rep Phelps, David D. - 6/20/2000
Rep Fossella, Vito - 6/28/2000
Rep Carson, Julia - 6/28/2000
Rep Mascara, Frank - 6/28/2000
Rep Danner, Pat - 7/12/2000
Rep Ros-Lehtinen, Ileana - 7/12/2000
Rep Whitfield, Ed - 7/12/2000
Kathy, thanks for all the info and I look forward to seeing the
database!
Regarding the peptide T; is there information on this that could be
forwarded to potential corporate sponsors? Have any pharmaceutical
firms been approached at all? From a grass roots level, what can we
parents do other than nag our pediatricians? I guess what I am
trying to say is how do we get the right information to the right
people to try and generate some interest? This might be a prime time
given all the publicity lately in Newsweek and other publications.
Don't we have a presidential candidate running around on the platform
for healthcare for children????
Thanks.
ann
Wow. I actually think I can give some input rather than ask. :)
Our son was diagnosed in March 99. He was 4.5 I sat in a
developmental pediatricians office while given a nice lecture
on how there was a 50/50 chance at independent life, how
he *might* be mainstreamable about the 2nd grade, how I
really needed to look into support groups and get my then
5 month old twins into a sibling support group because it
is so hard to have a weird sibling. My school district was all
geared up for a special ed placement....I started him on DMG and
SuperNu thera. He was making improvements as I also began
to do more with him at home. I took him off DMG and Supernu
and asked others how he seemed. They all said he was improving.
So, I knew supernu thera and DMG were not going to do the trick.
We began to take gluten out of his diet.
Three months after the dx (june 99), I started a homebased ABA.
That was the summer of great change. He was more focused and
more verbal. We started preschool that fall with ABA at home.
In late Sept, we began to see Goldberg. Now, my child is "high functioning"
(whatever that term means anymore). So, it isn't like we had the
great milestone markers to rely on. At first, I was wondering if
some of the drugs administered were doing anything at all.
I noticed several things on the health front. In the 11 months that
we have used Goldberg, our son has only been sick three times.
This is a minor miracle in itself. The previous two years consisted
of an illness a month with an ear infection almost every month for
a little over a year. Is it coincidence? hmm.. Maybe. Maybe he
just "outgrew" illness....
Where we did see something was in xmas 99. We started Diflucan
and since it was the holidays, his ABA hours reduced, he had no
school, no speech, and no OT for two weeks. All the tutors came
back and remarked that his language was really really good. Pronoun
usage was better. He was slower when speaking.
I do believe that the antifungal improved a subtle area in his speech.
(our son has always been verbal but had trouble stringing sentences
together.) My son's overall physical health has been better. His sleep
is better (he still is hyper and still has trouble getting to sleep but
he actually has started to stay asleep.)
ABA was the foundation for everything. We would not be where we
are today without it. Our son is in his first week of a typical kindergarten
setting (with aides from our program who are fading out as the year goes
on.) He was tested at a 3rd/4th grade reading level, a 1st grade math
level... He has friends. He has a sense of humour. ABA is not just about
teaching "facts and figures." Many people have no clue what the upper
level programming is like. We are in the fifth stage of Lovaas. It
consists of 6 hours a week of peer play. We have a theory of mind
program. We have "conversational" language programs, we have
pragmatics of language programs. Our consultants go into school,
later the same day, they observe a peer play, and then we hold
workshops to discuss what issues she saw that day. when we
were in the 3/4th stages, we had pretend play programs with
the child leading and initiating - not just following and responding.
There are areas, however, that ABA can't touch. It is in the area
of physical health. ABA won't change the fact that my son is always
on the anemic side. It wasn't responsible for the change in his bowels
(which were problematic before the diet and antifungals.) There
are other areas that I think are purely medical- the way my son gets
jumbly in his speech sometimes. The way his eyes get dilated
(something I NEVER noticed before until a meeting with Goldberg.
I walked out of his room thinking that he was nuts because he told
me that Alex's eyes were dilated. I thought that a bunch of bullsh*t.
Then I started looking at other children and wouldn't you know it...
His eyes *WERE* dilated and they were sometimes HUGE.)
ABA can't touch this. I can't use discrete trial to force my son to not
dilate his pupils. No amount of soy ice cream, token money, or
"atta boys" will touch this. :) His HHV6 titers, RBC, WBC, high
triglyceride levels, etc should be dealt with medically. It is really
a crime that the developmental "dr. Gloom and doom" pediatrician
that dx'd my son couldn't think to test for anything but fragile X.
I think that a child who is physically healthy is more able to learn
in a naturalised environment. No educational program will be
able to change that.
Is the NIDS protocal going to cure my son alone? Nah.. But it is an
important part of an overall plan to get him as close to recovery
as possible. It is too bad that parents must deal with all the professional
biases (ABA is the only way, NIDS is the only way, DAN doctors
are better, etc) in mapping out a way to help their child.
Erika
Mercy, What you said about the diet is Profound! I am constantly saying to
people, "Well no actually cheese is made from milk so she can't have cheese"
and sometimes I follow it up by pointing out that it takes 8 days to process
the milk protein out of the body so if they sneak the cheese or just one
little taste of ice cream or some chocolate or whatever that sets my child
back for over a week! The first day of day camp Cindy came home and told me
that she had some chocolate fruiteos or some kind of high sugar cereal, left
over from the breakfast program, with milk on it for a snack. Now she knows
that she is not supposed to have wheat or dairy and since she has never had
anything but organic no additives, low sugar cereal her entire life she asked
the Counselor if it was OK to eat and she was assured that it was! I send in
all of her food and the rule is I don't send it she does not get it but the
rule gets broken in school also! Usually Cindy will refuse the food but when
it is a Birthday Party and the teacher says that it is OK...I have almost
nothing in my house that she can't eat because I don't want any mistakes here
either. A bit frustrating at times isn't it? Kathy
Yvonne, I did not write that exact quote down but some kids have taken much
longer to go into remission. After the data base is done we might actually be
able to give parents a range. I think if you are told it is going to take a
year for example you will not be disappointed. My daughter has done some
regressing over the summer because of the severe mold and pollen problem that
we have had this year. Is it possible that there is something like that
complicating things for your little girl? Kathy R
There have been a few kids in Dr. G's caseload that took a long, long time to
respond to the treatment and then they did. It is my impression from what he
described that when they did they really did. So what I am trying to say in a
rather inarticulate way that there may be progress going on but it is not on
the level that you can see it unfortunately! It is my impression that all
children who stuck with the protocol have eventually responded. In a few more
weeks there may be some you some data on that kind of information that will
give you a lift! It is being put in a data base now! Think about it this
way. If your child had Leukemia of course you would want him to go into
remission as soon as possible but after he finally went into remission the
time factor would no longer be an issue would it? Once that major hurdle is
past you get so involved with rehabilitation that you begin to forget that it
took as long as it did! What we need is for everyone to work on getting money
so that we can get Peptide-T tested. Doesn't anyone have any nice corporate
friends who need a really good tax deduction? Kathy
No you are not alone
My son has had slow and steady progress. We have been with dr. G for two
years and I know how you feel. I have watched him slowly progress, not
fast enough, and I know the frustration. My son is still non verbal and
I am teaching him sign language plus I have taught myself how to do
speech therapy by reading and learning.
It is very hard to convince the rest of the family of the importance of
the diet. They cheat left and right. But no one has said anything about
medication. I can't do the kutapressin because it is shots and my
husband does not want me to do it.
No you are not alone. I have said that over and over. I know if I am the
only mom with a slow progressing child then I am not because God is with
me.
You have my prayers.
Mercy
We've been on Dr. G's protocol for about 9 months, with little or no
progress, although we've had 2 incidents where our daughter had marvelous
progress for about a week, then slipped back. So - you're not alone in your
frustration. We just started with diflucan this week, hoping it will the the
silver bullet.
Yvonne
Kathy, please excuse my post; I didn't mean it to imply anything
negative about Dr. G or his treatment. I'm just very confused by my
son's response. I know that there is not one approach for everyone,
and that some individuals may indeed not respond to what 99.9% of the
population responds positively to. I was just wondering if there was
anyone else out there who's child just didn't seem to respond, or
responded more negatively. We have no intention of giving up with
Dr. G, I just need to see if we are alone in our quest.
Hi,
My daughter, Cindy has the weepy periods also. I think about all of the years
that she did not react and didn't cry and actually I'm glad that she is
catching up. I think that I read somewhere that the normal child cries once
every day for the first 7 years of their life. When she starts crying we talk
about it and try to figure out what is causing it, if there is nothing
concrete we just decide that it is the medication and have a cup of tea. Do
you suppose that she is in training for PMS? Kathy R
Dr. G has been doing this for over a decade and a half and I am sure that he
has come across other kids with similar problems. Unfortunately you do have
to do a bit of trial and error with drugs and that takes TIME and it is
FRUSTRATING. However, I have never known him to give up on any child so
please be patient. If we could just get the money to make Peptide-T available
I think that your problems would be solved! Kathy R
This article seems to be more validation of the NIDS theory. When they came
out with the news about the markers they found in kids that were later
diagnosed with autism, they were neurotropins, VIP, BDNF, etc. As we all
know, there tend to be gastrointestinal problems in these kids. The little
snippet below is from an abstract I posted before, but it may help in
understanding the immune connection.
Cheryl
snip
factor (BDNF), are potent regulators of neuronal functions. Here we show
that human immune cells also produce NT-3 mRNA, secrete BDNF, and express
their specific receptors trkB and trkC.
Neurotrophic Factors Stimulate Gut Motility in Humans
Hi everyone
My son has been on SSRIs for about three years. As well as he does on them,
he periodically has episodes of genuine sadness. Sometimes it's hard to
distinguish the difference between a normal human reaction and one that may
be a side effect to medication, but I have heard that antidepressants can
sometimes cause paradoxical depression. Has anyone else seen this?
(Incidentally, we follow the NIDS protocol.)
I also have a story that I think is a pretty cute coping mechanism by our
son: The other day he was upset about something and had been crying for
about 20 minutes. We told him that the crying should be about over by
now....so he said "all right, all right," and went sniffling away to his
room. I heard him cutting some paper so I went in and watched as he cut out
an arch shape (sort of) then taking markers, drew long lines across it to
form a rainbow. I asked, "why did you make a rainbow?" and he placed the
picture under his chin and told me, "because I stopped raining."
Anyway, any input about sadness and SSRIs is appreciated. Thanks! Becky
Hello Listmembers! Unlocking Autism has provided this below sample letter
for us to copy and send to them in support of this very important Autism
Awareness Stamp! Please please please do this!!
Thank you!
Michelle Guppy
This stamp would be at the regular postal
rate. If we can get 220 Congressmen signed on by October they can pass it
easily. Right now we have only 46 who have co-signed or about 10% of the
House of Representatives. There are a lot of people to write!
You can find your representatives at www.house.gov/writerep.
Thanks so much!
Shelley
SAMPLE LETTER: BE SURE TO FILL IN THE APPROPRIATE PLACES WITH YOUR OWN
PERSONAL INFORMATION WHEN SENDING THIS LETTER. OR USE THIS ONE TO HELP YOU
CONSTRUCT YOUR OWN.
Dear Congressman (NAME):
I am writing you to ask you for your support of H.RES.458 by Congressman
Richard Baker (Baton Rouge, LA - R) which would express the sense of the US
House of Representatives that:
(1) a commemorative postage stamp should be issued by the United States
Postal Service on the subject of autism awareness; and
(2) the Citizens' Stamp Advisory Committee should recommend to the
Postmaster General that such a postage stamp be issued and a Sense of
Congress that the USPS should strongly consider issuing an autism awareness
stamp.
Recognition of this disorder in the form of a stamp would mean so much to
our
family because (FILL IN YOUR PERSONAL REASON HERE) ......
Rates of autism have risen dramatically over the last ten years and are
continuing to rise. It is conservatively estimated that one in 250 children
in the country are diagnosed with an autism spectrum disorder. Only ten
years ago, one child in 10,000 was being diagnosed. It is time for this
country to become aware of the disorder that affects more children than any
other. This stamp, among other things, would greatly assist our community
in
doing so.
Despite the epidemic increase of autism throughout this country and the
world, the USPS has repeatedly denied our community of a stamp indicating
that they believe that not enough people are affected by autism to make it
worth their while.
Surely the children of this nation and the families, professionals and
friends that care for them deserve this much recognition for the daily
struggles that they have.
I am asking that you would please make it worth your while and cosponsor
H.RES.458. In passing such a resolution, you would be able to help us let
the USPS know that there is a large enough community out there to warrant
their time and effort in this manner.
I would like to have a response to this email regarding your position on
this
proposed resolution.
With greatest respect,
YOUR NAME
YOUR ADDRESS
YOUR CITY, STATE, ZIP
YOUR PHONE NUMBER
YOUR EMAIL ADDRESS
experienced this with your child. My son has responded to the Valtrex, butnot
as positively so we moved on to Famvir which he did have an adversive reaction
to. He became really involved in more repeititive activities. It was pretty
depressing, but I can't imagine going through what you are going through. I
guess maybe these medications do not agree with your child chemically and maybe
you need to try Kutapressin. I think that is where we are headed. I wish you
all the luck and my heart goes out to you. Good luck. Kathy
I'm wondering if our situation is unique; hopefully some might be willing to
share their experiences.
1. Our son tests positive for HH6. We've tried both antivirals suggested
(Valtrex and famvir) and our son definitely responded to both. He
ultimately became nothing short of a violent, angry child. I went through 4
weeks of "die off" with one of the drugs, and two weeks on
another. He only became worse with time. He became so bad that he was
threatened with removal from school. We now have to have a full time
personal aid with him because of his behavior on these drugs (which he is off,
but I guess the school is still concerned). Has anyone else had
a HH6 positive kid who could not take antivirals? If so, what did you do?
2. Our son also tested very positive for yeast. After 4 months straight on
nizoral, I can a CDSA through Great Smokies with him still taking
the Nizoral; it still came back positive! In addition, he had been getting 1
culturelle a day; he cam back with NO acidophillus at all.
We're scheduled to speak with Dr. Goldberg in another couple of weeks, but I
guess I just need to hear from someone on whether this is typical
or atypical. It is clear he can not handle the antivirals; since the nizoral
doesn't seem to be helping, I'm wondering why I should keep him
on something which is so hard on the liver. Are we just a "non-responder" to
the NIDS protocol?
Thanks for any input.
ann
Fax or e mail him and his office will get back to you. Kathy
Freyda,
The majority of people on this list have children who are recovering from
autistic spectrum disorders because they are on the NIDS protocol. Look at
neuroimmunedr.com and you will see what we are doing. Kathy
Charlie, could you please tell me about his program, or direct me to where I
can learn more, we are just now getting started on a dx for our son, but I
really suspect he is autistic or at least on the spectrum somewhere.
Thanks a bunch
Donna /Indiana
mom to Carl 18
Hayden, Robert, Trevor 26 months
Scrapbook Addict
To view my scrapbook, go to:
http://albums.photopoint.com/j/AlbumList?u=200373
ADDHelpline is sponsoring a chat tonite about teaching your children
organizational skills. Guest speaker will be ADD Coach, Norma Heller.
Chat is from 9pm until 10pm eastern time
http://addhelpline.homestead.com/index.html
eileen
addhelpline@...
http://go.to/addhelpline
"Together we can make a difference in the lives of our children."
HI I'm new on this list and I have a 10 year old autistic boy. We lived in
Memphis for 3 years (92-95). my son was in a great program the last year
we were there.Also unless things changed drastically I would stay away from
UT for a diagnosis. my son was misdiagnosis as retarded and not on the
spectrum because he came to us when he was in pain. He has since been
diagnosis 3x as pdd/nos. If you want any more information feel free to
email me privately
Freyda
avrmom@...
My child has only been on the protocol for 8 months. However the changes that
we saw have been very impressive. Ungraded classes in the first marking
period of school honor role the last marking period. Constant behavior
problems from Sept. to Jan. Citizenship award in June (don't know which
surprised us more). Poor expressive language now able to have a conversation
on the phone for 25 minutes (long distance of course). Crippled by phobias,
now has a few fears that are fairly age appropriate. Hyperacusis greatly
improved. I could go on and on but my child started off as ADHD, PDD, and
OCD. She lost her language for a year but got some aback when I started a
rotation diet and allergen control when she was 4. There are children who had
no speech/ability to communicate who have lost their autistic diagnosis after
treatment. You won't find a lot of parents of children who are cured because
as Cheryl once said "They have a life!" We are collecting the histories
however and will eventually make them available. Kathy
they can give them more information. We are from Chicago and I flew to Maryland
to see him. I know he also goes out to New York, but his main office is in
California.
Good Luck. Kathy
slow. He has been treated for yeast and is improving and we are on the diet.
He did not have the spect scans done, but his blood work showed that he is
currently fighting a retro-virus due to the problems with his immune system.
Colin is also in Discrete Trial at school and is doing pretty well. He has
dyspraxia on top of his PDD so we are waiting for speech. Colin is 4, how old
is your child? Congrats on his progress! Kathy
Could I please be unsubscribed under my current e-mail address of
chrismmail@... and subscribed under chrismmail2@.... If this switch
can not be done in one shot please let me know how to set up the list under
the newer address.
A dear friend of ours is very interested in seeking Dr. Goldberg's servies
for their 9 yos. They have completed most of the required blood work. Does
anyone know where his office is (or if he travels to different centers) and
what is involved in seeking his services? Our friends live in Ontario and
have questions about the number of office trips, waiting list, intervention
and cost.
Thanks,
Heather
To Heather:
Please call Dr. Goldberg's office at 1-818-343-1010 to find all information.
Isoaa.
Hi
is anyone who did his suggested tests, had the neurospect scan done, did his
diet, and had the antifungal to improve the immune system, and recovered
their child. I am asking because my son is on the GFCF diet and 30 hours of
ABA for 1 month and I can't believe the improvement. I am wondering if I can
improve him some more with these other things. Any input would be great.
Kathy, I know I will be hearing from you! Michelle
I have a friend in Memphis, TN with a 21 month old boy who will probably be
diagnosed in the autistic spectrum. Does anyone know of resources which exist
there in terms of diagnostics, therapy (especially floor-time/Greenspan),
special schools, etc. Any recommendations would be appreciated.
Charles
Those are absolutely the most important tests. You have to see what the
cytokines are doing, you have to see what antibodies are elevated. Conversely
you want to see what are not elevated and compare that to the history. The
tests are expensive but this is a progressive disease and after the age of
ten you will begin to see brain destruction on the neurospects. In New York
State the total battery of tests would run about 2 thousand dollars but how
do you put a price tag on a child's future? We are going to do fund raisers
to help some of our patients pay for the tests. I know of one family that is
going to try and get a loan to do the testing. In the future none of this
will be an issue but right now we are all trail blazers and there is always a
price for that. KathyR
my brother found the following article in DISCOVER Sept 2000
He saw the mention of autism and thought it was interesting.
Also the fact that my husband is 6'5" and my son weighed in at 9.06
at birth had nothing to do with it :-)
SEXING THE GENOME pg 8
Evolution is ultimately a battle of the sexes. Fathers favor large
offspring with a better chance of survival so mammalian males evolved
genes that promote growth. Hefty young are a drain on the mother
so females evolved competing sets of anti growth genes.
Biologists had thought this genetic monkey-wrenching, called imprinting,
first evolved in placental mammals,whichinvest heavily in getating their
young.
But molecular biologist Randy Jirtle of Duke Univ and his colleagues
found that
marsupials also have imprinted genes.
Imprinted genes are linked with cancer, AS WELL AS AUTISM and other
behavioral disorders. "The closer we get to understanding imprinting
the better
chance we have of finding ways to loosen the imprinted genes through
chemical means" Jirtle says.
Bear with me here folks. I'm trying to put all this into perspective.
I understand what Dr.G believes about the Immune System being damaged
and that he prescribes "medicine" for the kids, but I read about so
many different things that you all discuss that your children are on.
Like Kutapressin, Famvir and others that I can't think of right now.
Why all the different things and what do they do exactly? Thanks
again
for your help.
Diane B.
I also am considering trying NIDS. I got the blood work tests off his
site and took it to my pediatrician. She is helping me out as much as
she can as far as tests that she can do under "nutritional reasons"
so
that my insurance will pay for it. She can do all of the 7 first test
listed as Most Important, but she can only do 6 of the Immune Panel
tests. Which leaves these following tests not done.
Total & Percent CD4
Total & Percent CD8
Total & Percent CD16/CD56
Total & Percent CD19
Candida Titer
HHV6 Titer
Quantatative Immunoglobulins
Gliadin Antibodies
Alpha Interferon
Allergy Food screen
How far can I get without these being done, if anywhere? Does anyone
know how expensive these would be if I have to pay for them?
Thanks for all your help.
Diane B. mother of Taryn 6yr
Please put me at no-mail until Aug18th. I am going on a much needed
vacation!!! Thank you all!! Lois
If your pediatrician will read the article Dr. Goldberg has posted at his
website on autism and the immune system, the work-up will make sense to him.
It's very straighforward in terms of the medical rationale and all the tests
are well understood by physicians. The hardest part is convincing them (and
your insurance co.) that they apply to autism. Linda
Hi! I'm getting ready to try to convice our pediatrician to have
the tests done that Dr. Goldberg reccomends, I have the work up list,
but it's hard to know what they are for or what they test. Is there
a way of finding out so that I better understand and hopefully can be
more convincing?
Also, How do you become a patient of Dr. Goldbergs? or if you
don't, how do I get help with what path to go on after the tests are
done??
Any help with this would be appreciated. Thanks!! Jill, mom to
Seth (4)
Thanks to all who responded to my questions about kutapressin. It is
reassuring to be armed with information and experience from you all before
under taking this.
Thanks again,
Connie
Nystatin was a great drug at one time but it is now too weak to be of much
use for what is needed. The issue is not the antibiotics or the yeast it is
the fact that the immune system cannot handle the yeast. The majority of
children who get antibiotics do not end up with yeast infections that they
cannot get rid of because they have normal immune systems. While it is true
that Dr. G uses antifungals to get rid of yeast he does it for the more
important reason of calming the immune system which eventually results in
greater perfusion to the parts of the brain that are not being used. This is
an important difference. The problem is in the immune system. Until you make
a concerted effort to heal the immune system no real progress will be made.
First question:
Could someone please tell me why some physicians prefer
to use antifungals like Diflucan and others
start off with Nystatin? From what I have
read, Nystatin is the safest anti-yeast drug because it does not cross into
the blood stream. There are no side effects besides the die-off itself.
I seem to recall that Dr. Goldberg mentioned something about this
in one of his "lectures" but my mind is a blank right now as to what
he said.
Second question: I know that chronic antibiotic use can cause yeast
overgrowth. Are there other dietary concerns that can cause this?
I think in my son's case, the yeast overgrowth was probably due to
1+ years of CONSTANT anitbiotic use. However, I have a friend
whose son has rarely taken antibiotics...
Many thanks,
Erika
Diane, My 8yo daughter did AIT 10days x2 hours (I think it was 2
hours) a day. It was in San Diego. To be honest I
haven't seen any change at all in my daughter's sensitivity's. She
is still very much bothered by many sounds. But I
did see pretty miraculous results on 2 other non verbal children
doing training at same time. We are now doing Fast
ForWord. The AIT cost $1300. Ellen
Go to Dr. Goldberg's website neuroimmunedr.com also Dr. Doris Rapp has been
investigating environmental toxins and their relationship to ADD for years.
She also has a website. KathyR
ADDHelpline is sponsoring a Parent To Parent Chat tonite. Open forum to discuss
ideas, offer support and ask questions of other parents relating to dealing with
ADD/ADHD in your child.
Chat will be from 9pm until 10pm eastern time
http://addhelpline.homestead.com/index.html
Please join us
eileen
addhelpline@...
http://go.to/addhelpline
"Together we can make a difference in the lives of our children."
Michelle,
What does Dr. Goldberg say? Kathy
Michelle:
The only way to really know if casein is a problem is to give it to him. Be
sure to be with him for the next several hours to see of any negative
behaviors, such as: hyperactivity, spaciness, etc... It is really a trial
and error when it comes to foods. The most important thing is to avoid
dairy products, chocolate and whole wheat. The diet alone will not be the
cure for these children. You can go overboard and drive yourself crazy.
Check out Dr. Goldberg's website. neuroimmunedr. com
Signed: isoaa
My son's bloodwork shows that he is only casein intolerant. His gluten range
was below the range. His was 18 and the range was <20. I asked the
nutritionist if that was kind of close and he said not to worry. Well, I am
worried because with all the reading, you hear of children being both casein
and gluten intolerant. Is there anyone out there with a child with only a
casein problem? I really want to trust this doctor, but my heart tells me
something else. His only real problem is speech. Once I took him off casein
his stool got better, his sleeping and eye contact improved and his ABA
teachers are really impressed with his quick learning. I should be happy, but
I am wondering if he could be even better being off gluten. Any input will be
appreciated. Thanks, Michelle
My son's bloodwork shows that he has low carnitine level and was prescribed
Carnitor. Does anyone have a child that has this? If so, did your doctor
prescribe carnitor? My concern is it's side effects=irritable bowel, because
my son hasa leaky gut as well. Thanks,Michelle
CAn you tell me what AIT entails? What is actually being done? Thanks,
Michelle
I haven't begun this, but many people hire a visiting nurse to teach them
administration. Dr. Goldberg's office can write an order for a nurse to come
out for a home-visit to teach this skill (in order for the insurance company
to pay for the visit). Becky
Jenny:
How is Biofeedback going? Will you email me privately from time to time to
update me about the progress (since you just started)? I am very curious
about this for children with autism, especially for attention problems.
Thanks! Becky
Thanks to every one for past advice regarding alternatives to cows
and soy milk. After trying everything we could get our hands on the
boys have responded best to sheep's milk. Does anyone know Dr
Goldberg's opinion on this?
Also I have been reading the posts on AIT etc and please excuse my
ignorance but what does it stand for? Auditory Integration Therapy
or something? We are currently doing Biofeedback and Somonas sound
therapy with our oldest son but have only been doing so daily for one
week and wondered if anyone knew the difference between Somanas and
Tomatis and as to which one had a better result with Autistic kids as
Tomatis will be available in Western Australia in a few months and we
don't know whether we should stick with what we are doing or swap.
Thanks for your advice.
Jenny
I think this is a situation where every child is different. We did AIT for
Danny last year and are currently in the midst of Tomatis. When we did AIT, a
large part of Danny's issues with hearing things that we don't normalized (ie:
he used to hear airplanes that we barely could see in the sky). His receptive
language took a very large leap after we were finished with AIT.
We saw some really good things with AIT. We went to the Davis Center out in
Budd Lake. I really like Dorinne Davis. If anyone is interested, you should
contact her, I am sure that she will be happy to answer any questions.
I know this week she is doing an outreach for AIT in ocean county. She is
planning on doing one in White Plains in Sept.
Roe
Message: 7
Date: Fri, 28 Jul 2000 10:54:04 -0700
From: "1raptor" <1raptor@...
Subject: Re: AIT Training
Hi Diane,
The only treatments that I have tried were concerning the medical issues. I
think it's important to get the brain working properly before anything else.
The only thing I have heard about AIT was in J. Smythes testimony.(link
below) He is now addressing the medical issues, but in his testimony he
states that his son lost the few words he had after AIT.
Cheryl
http://www.house.gov/reform/hearings/healthcare/00.06.04/smythe.htm
Welcome to the August edition of ADDHelpline Newsletter
This month we focus on "Preparing for Back To School"
For the online version of the newsletter, please visit
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Letter From The Editor
Summer is almost over and it is almost that most dreaded and most loved time of
year:
BACK TO SCHOOL. Most dreaded because many of us have children that struggle in
school and our hearts break each day that they try so hard to just keep up with
the class
and most loved because, let's face it, most of them were bored and bouncing off
the walls
for the last half of the summer.
And so we return to the routine of early mornings and lost homework and major
assignments remembered the evening before the due date.
But there is hope. With each year that we, as parents, become more informed, and
join
together to share our experiences and knwledge, we will move closer to a better
life
for our children.
Most of the articles in this newsletter were written by other parents, who have
been there,
and can join us here to share their experiences and successes. I hope that this
information
will create a better school year for your child.
Eileen
addhelpline@...
MOTIVATIONAL GAME OF THE MONTH
The Puzzle Game
Use an age appropraite picture: clowns, animals, race cars, etc. and cut into
pieces, as if
making a puzzle. The younger the chld, the less pieces. Each day that their bed
is made
before school, they get to put up a piece of the puzzle. When the puzzle is
completed, there
is a reward.
This is a good game to play with the whole family, and when all the puzzles are
completed,
take them to their favorite restaurant for dinner.
ORGANIZATIONAL TIP FOR THE MONTH
Homework Preparation
Use a small box or other container to hold all items that might be needed for
homework:
Pencils, Erasers, Rulers, Pens, Crayons, Markers, Scrap Paper, Sharpeners, etc.
When it
is time for homework the box is there with all of the supplies and there aren't
any "excuses"
for getting up from the table. Once homework is completed, the box is put away
so that the
next day all items are there and ready for use again.
PRODUCT SHOWCASE
Homework Binder
ON SALE FOR BACK TO SCHOOL
Order to receive in time for the start of the new school year.
School binder designed specifically for children with ADD/ADHD with pockets and
places for
homework, signatures, reminders, etc.
http://thisandthatstore.homestead.com/homework.html
ASK THE COACH
This Month Kitty Ford answers questions about:
ADHD and Drug Abuse
NYC Support Groups
Prep Schools For Teenagers
http://addhelpline3.homestead.com/askthecoachaugust.html
A Student's Plea to A Teacher
A high school student asks his teacher for understanding of ADD/ADHD.
http://addhelpline3.homestead.com/astudentsplea.html
10 Tips To Start The School Year Off Positively
by Robin Maier MSW ACT
Robin Maier has ADD, is the parent of four children, three of which have ADD.
She graduated
from OFI as an ADD Coach and has an MSW. She has spent many years in education
and
is continually striving to find better ways to help families and those with
either LD or ADD.
http://addhelpline3.homestead.com/10waysschoolyear.html
Organizing Your ADD/ADHD Child To Return To School
Strategies for helping your child to be organized during school
by Norma J. Heller and Jo Ann Sheldon
http://addhelpline3.homestead.com/schoolorganization.html
My Experience With The School System
A reader shares her experience in setting up an IEP for her child and shares
ways for you to
create a better learning environment for your child
http://addhelpline3.homestead.com/myexperience.html
Is Your Student Ready For Middle School?
The transition to middle school can be difficult. Ideas to help your child
prepare for these
transitional school years.
by Peggy Umansky
http://addhelpline3.homestead.com/preparemiddlesch.html
ADDHelpline Internet Guide
Each month we will bring you ten sites to further your knowledge about the focus
of the month.
by Kimberly Hill
Since it is that time of year again, here are some Homework Tips and websites to
explore for
homework help.
http://addhelpline3.homestead.com/internetguidehomework.html
This months success story
An adult with ADD shares his memories of his school days
http://addhelpline.homestead.com/success.html
Proudest Moments
A mother shares an inspiration story about her child and a recent high school
graduate shares
her pride in graduating and moving on to college
http://addhelpline.homestead.com/proudestmoment.html
Your Opinion Please
A reader shares his opinion of ritalin and the effects it may have on children
http://addhelpline.homestead.com/opinion.html
Free Ezines
A listing of 10 ezines to help you explore alternative medications and
treatments
http://addhelpline3.homestead.com/ezines.html
Enjoy!!!!!
Next month we will discuss non-medication treatments for ADD/ADHD
Eileen
Hi Diane,
The only treatments that I have tried were concerning the medical issues. I
think it's important to get the brain working properly before anything else.
The only thing I have heard about AIT was in J. Smythes testimony.(link
below) He is now addressing the medical issues, but in his testimony he
states that his son lost the few words he had after AIT.
Cheryl
http://www.house.gov/reform/hearings/healthcare/00.06.04/smythe.htm
Has anyone ever tried AIT Training? My son is five years old and we have
an opportunity to try this treatment. Any feedback good or bad would be
greatly appreciated. Thank you.
Diane
--- Diane
--- bestwayinc@...
--- EarthLink: It's your Internet.
i had p;itocin as well with my first, but knew better with the girls who are
fine
Please respond to steinman@...
Hi everyone,
I am looking for a therapy calledChelation Therapy, Please email me if any
one knows of this .
denisemacri@...
Laeeth,
Ask Dr. Goldberg for his CFS pre screen packet (818)343-1010. What about
your Natural Killer Cells? I have Chronic Fatigue syndrome. if you want
more info you may e-mail me privately.
Tina Hendrix
Hi
I've had some test results back from Great Plains, and I wondered if
anyone here might have some thoughts on possible interpretations on
what they mean for a 27 year old male with fatigue.
The urine amino acid panel shows deficiencies in Threonine, Valine,
Isoleucine, Leucine, Phenylalanine, Tryptophan, Arginine, Glutamic
Acid, Glycine, Alanine, Asparagine, Tyrosine, Taurine,
Phosphoethanolamine, Alpha Aminobutyric, Cystine and Ornithine.
Fatty acid panel shows low alpha-linolenic acid, gamma linolenic acid
and elevated eicosadienoic, dihommogammalinoleic, arachidonic,
docosatetronoic (suspect latter due to a fish oil supplement).
IgE is almost 1000, but eosinophil count is normal. IgA, IgG and sub-
classes are all normal. No food or inhalant allergies we didn't
already know about. Transglutaminase test does not indicate celiac
disease.
Organic acid testing shows low 2-oxoglutaric (but normal citrate),
mildly elevated glyceric (but normal yeast metabolites and oxalic),
low pyroglutamic and mildly elevated acetoacetic. The lab isn't sure
what the glyceric means, thinks the acetoacetic reflects overnight
fasting, and that oxoglutaric/pyroglutamic reflects glutathione
deficiency. I guess the glutathione deficiency probably just
reflects the cystine deficiency, although I'm wondering whether it
might also be depleted by a chronic viral infection.
Since the protein intake is normal, I'm guessing this means there is
a problem with absorption so a trial of HCl and digestive enzymes
would make sense.
The question I have is whether it is likely to be worth investigating
what the root cause of the malabsorption is (parasites/chronic viral
infection of the gut?), and if so what tests might be indicated.
Many thanks.
Laeeth
I just read that the MIND Institute at UC Davis just received $30 million in
grant money to "study autism". Has anyone explored the options of approaching
them with Dr. Goldberg's theories for some monetary help?
It amazes me that we are having such a hard time getting the backing for the
NIDS trials. Everything keeps pointing toward this as being the answer for
our kids. When you look at the markers found in kids that later developed
autism, it seems to be one more piece that validates the NIDS hypothosis.
So where is the $$$,
"The findings, reported Wednesday at a San Diego meeting of the American
Academy of Neurology, suggest that autism probably arises from a combination
of genetic defects and exposure to toxic chemicals, viruses or other
environmental substances. It also indicates that the crucial period for such
factors is during the early weeks of pregnancy, when the central nervous
system is forming."
"Nelson reported Wednesday at the meeting that four of the
proteins--vasoactive intestinal peptide, calcitonin-related gene peptide,
brain-derived neurotrophic factor and neurotrophin 4--were present at
elevated levels in 96.9% of the autistic children and 92.4% of those with
mental retardation. In contrast, they were elevated in only 9.2% of the
children with cerebral palsy and in none of the healthy control subjects."
If we look at what these actually are and what they do, it seems insane
that nothing is being done, NOW. There is so much science that validates
the mechanisms involved and how other things like infections/immune
stressors can cause the deterioration and worsening of the neuroimmune
dysfunction. Yet so many want to try to focus on one trigger as being the
cause. I can understand why Dr. G gets so frustrated at the different
things going on.
Cheryl
"Activated brain microglia play a pivotal role in inflammatory and
degenerative disorders, mediating immune function and producing toxic and
trophic agents. We previously reported that microglia express neurotrophins"
Cutting edge: clonally restricted production of the neurotrophins
brain-derived neurotrophic factor and neurotrophin-3 mRNA by human immune
cells and Th1/Th2-polarized expression of their receptors.
Author
Besser M; Wank R
Address
Institute of Immunology, University of Munich, Munich, Germany.
Source
J Immunol, 1999 Jun, 162:11, 6303-6
Abstract
Neurotrophins, such as neurotrophin-3 (NT-3) and brain-derived neurotrophic
factor (BDNF), are potent regulators of neuronal functions. Here we show
that human immune cells also produce NT-3 mRNA, secrete BDNF, and express
their specific receptors trkB and trkC. The truncated trkB receptor, usually
expressed in sensory neurons of the central nervous system, was also
constitutively expressed in unstimulated Th cells. Full-length trkB was
detectable in stimulated PBMC, B cell lines, and Th1, but not in Th2 and Th0
cell clones. Clonally restricted expression was also observed for trkC,
until now not detected on blood cells. The Th1 cytokine IL-2 stimulated
production of trkB mRNA but not of trkC, whereas the Th2 cytokine IL-4
enhanced NT-3 but not BDNF mRNA expression. Microbial Ags, which influence
the Th1/Th2 balance, could therefore modulate the neurotrophic system and
thereby affect neuronal synaptic activity of the central nervous system.
Language of Publication
English
Unique Identifier
99282907
Learning abilities, NGF and BDNF brain levels in two lines of TNF-alpha
transgenic mice, one characterized by neurological disorders, the other
phenotypically normal.
Author
Aloe L; Properzi F; Probert L; Akassoglou K; Kassiotis G; Micera A; Fiore M
Address
Institute of Neurobiology, CNR, viale Marx, 43-15, 00137, Rome, Italy.
aloe@...
Source
Brain Res, 1999 Sep, 840:1-2, 125-37
Abstract
In this study we used two lines of transgenic mice overexpressing tumor
necrosis factor alpha (TNF-alpha) in the central nervous system (CNS), one
characterized by reactive gliosis, inflammatory demyelination and
neurological deficits (Tg6074) the other showing no neurological or
phenotypical alterations (TgK3) to investigate the effect of TNF-alpha on
brain nerve growth factor (NGF) and brain-derived neurotrophic factor (BDNF)
levels and learning abilities. The results showed that the amount of NGF in
the brain of Tg6074 and TgK3 transgenic mice is low in the hippocampus and
in the spinal cord, increases in the hypothalamus of Tg6074 and showed no
significant changes in the cortex. BDNF levels were low in the hippocampus
and spinal cord of TgK3. BDNF increased in the hypothalamus of TgK3 and
Tg6074 while in the cortex, BDNF increased only in Tg6074 mice. Transgenic
mice also had memory impairments as revealed by the Morris Water Maze test.
These findings indicate that TNF-alpha significantly influences BDNF and NGF
synthesis, most probably in a dose-dependent manner. Learning abilities were
also differently affected by overexpression of TNF-alpha, but were not
associated with inflammatory activity. The possible functional implications
of our findings are discussed.
Language of Publication
English
Unique Identifier
99448140
BDNF gene transfer to the mammalian brain using CNS-derived neural
precursors.
Author
Rubio F; Kokaia Z; Arco A; García Simón M; Snyder E; Lindvall O; Satrústegui
J; Martínez Serrano A
Address
Center of Molecular Biology Severo Ochoa, Autonomous University of Madrid,
CSIC, Madrid, Spain.
Source
Gene Ther, 1999 Nov, 6:11, 1851-66
Abstract
Neural stem cell lines represent a homogeneous source of cells for genetic,
developmental, and gene transfer and repair studies in the nervous system.
Since both gene transfer of neurotrophic factors and cell replacement
strategies are of immediate interest for therapeutical purposes, we have
generated BDNF-secreting neural stem cell lines and investigated to what
extent different endogenous levels of BDNF expression affect in vitro
survival, proliferation and differentiation of these cells. Also, we have
investigated the in vivo effects of such BDNF gene transfer procedure in the
rat neostriatum. Hippocampus- and cerebellum-derived cell lines reacted
differently to manipulations aimed at varying their levels of BDNF
production. Over-expression of BDNF enhanced survival of both cell types, in
a serum-deprivation assay. Conversely, and ruling out unspecific effects,
expression of an antisense version of BDNF resulted in compromised survival
of cerebellum-derived cells, and in a lethal phenotype in hippocampal
progenitors. These data indicate that endogenous BDNF level strongly
influences the in vitro survival of these cells. These effects are more
pronounced for hippocampus- than for cerebellum-derived progenitors.
Hippocampus-derived BDNF overproducers showed no major change in their
capacity to differentiate towards a neuronal phenotype in vitro. In
contrast, cerebellar progenitors overproducing BDNF did not differentiate
into neurons, whereas cells expressing the antisense BDNF construct
generated cells with morphological features of neurons and expressing
immunological neuronal markers. Taken together, these results provide
evidence that BDNF controls both the in vitro survival and differentiation
of neural stem cells. After in vivo transplantation of BDNF-overproducing
cells to the rat neostriatum, these survived better than the control ones,
and induced the expected neurotrophic effects on cholinergic neurons.
However, long-term (3 months) administration of BDNF resulted in detrimental
effects, at this location. These findings may be of importance for the
understanding of brain development, for the design of therapeutic
neuro-regenerative strategies, and for cell replacement and gene therapy
studies.
Language of Publication
English
Unique Identifier
20070364