The
5th DAN Conference was held at the Hilton Hotel, Cherry Hill. New Jersey
USA on 2 and 3 October, 1999. It was a well planned conference which brought
a number of the worlds leading experts together to discuss autism.
Their definitions, findings, and theories about the onset of autism and
what measures can be taken to help address the problem were presented.
The speakers were very thorough and detailed in their medical findings.
There was still no concluding evidence as to what causes autism but there
were a number of strategies put forward which did seem to point towards
autism being a multi-faceted problem caused by immune system irregularities,
gut problems, digestion, absorption and utilisation of foodstuffs with gut
irregularities, inflammation and a link with viral infection, whether acquired
or through vaccine.
It was only in the second day of the conference that any form of practical
direction was given which in my opinion was very disappointing. The speakers
were constantly referring to autism as a biomechanical issue which needs
to be addressed before any other forms of treatment are utilised such as
tutoring, and other forms of physical and mental therapies. I personally
do not agree with this and I feel it is important to look at the whole picture
and treat it holistically. I have summarised the key points raised by each
speaker in my report.
LAURA
J. STEVENS MS
Essential
Fatty acids and behaviour in children
Essential
fatty acids are important for two main reasons:
- They
form all cell membranes
- They
are precursors and act as communicators of information from cell to
cell
There
are two types of fatty acids;
- Omega
6 linoleic acid
- Omega
3 alpha-linoleic acid
Imbalances
of essential fatty acids (EFAs) can lead to metabolic disorders, digestion
and absorption. Some symptoms with deficiencies in essential fatty acids
may be:
- Excessive
thirst
- Frequent
Urination
- Dry
skin
- Dry,
unmanageable hair
- Brittle
nails l Dandruff l Follicular keratonines
The following mental disorders can be caused by low EFAs:
- Bipolar
disorder
- Schizophrenia
- Depression
- ADHD
- Autism
- Hyperactivity
- Learning
and behavioural problems
In
the Western diet Omega 6 fatty acids are too high in comparison with the
Omega 3 fatty acids and therefore there is a tendency to lack the Omega
3 fatty acids and not the Omega 6. These must be consumed within the diet
as we cannot make them. So where do we get such fatty acids?
- Omega
3 EFAs
- Flaxseed
oil (the best) l Hemp seed oil l Evening primrose
- Canola
oil l Soy oil l Soy l Kidney l Navy beans
- Walnuts
and walnut oil l Dark green leafy vegetables
- Cold
water fish, especially salmon but also in trout, mackerel and sardines
However,
do not go out and start spooning Omega 3 essential fatty acids down your
child. Before you start you should do the following:
- Screen
for symptoms of EFA deficiency
- Determine
the blood levels for those who are deficient
If
imbalances exist determine etiology.
These oils can be given orally or rubbed into the skin. They are heat
sensitive so do not cook with them. Mix fat-soluble vitamins in with them
ie A, D, E and K and mix in with their food.
PAUL
SHATTOCK OBE
Paul
Shattock is the director of the Autism Research Unit at Sunderland. There
is a genetic element involved with the onset of autism but it is not just
genetics. Something has changed in the environment which has caused it.
If it were purely genetic then there would not be a dramatic increase
in the number of autistic cases. It is an epidemic!
In 4,000 case studies into peptides or proteins in urine 80% of
autistic children tested have elevated levels. He indicated that vaccines
played a major role in this acquired autism. Soldiers going
off to the Gulf war had received vaccines in a single day for anthrax,
yellow fever, whooping cough, polio, rubella and others. Out of the 34
soldiers tested 32 had abnormal IaG levels and too many have autistic
children. By the age of one year the average baby has had ten vaccines.
The MMR vaccine was introduced in 1988 and the number of autistic cases
has grown astronomically since then. Experts deny it. It has been the
parents that have shed doubt over the vaccine and it is only now that
researchers and some doctors are seriously looking at this issue.
These are the characteristics of the new sub-group of autistics:
- They
are sociable and friendly!
- They
have a sudden development of thirst
- They
have an abnormal gait, tiptoe or are flatfooted
- They
have bowel problems
Their
biological markers are different. The IaG levels in typical autistics
is high. In normal children and vaccine damaged children they are normal
What factors could be influencing this?
- The
environment
- Vaccination
- Pesticides
-
Diet
- Infectious
diseases
- Environmental
pressures
JON
B PANGBORN Phd
In
brief Dr Pangborn has been working with a number of leading researchers
over the last three years to develop an enzyme which when taken into the
gut will breakdown the proteins gluten, gliadin and casein. As many of
you may know Paul Shattock at the Autism Research Institute at Sunderland
has shown that these proteins are present in the urine of autistic children
and are therefore not digested or broken down by the digestive enzymes
in the gut before passing through the gut wall and into the blood system.
These proteins are known as opiods and when they pass into the brain,
act as a morphine like substance which basically spaces out
the child. By just taking autistic children off gluten and casein products
ie wheat and dairy products there is considerable evidence that their
behaviour and other limiting factors improve dramatically.
This newly developed enzyme, Formula 2917 Multienzyme, breaks
down the gluten, casein and gliadin proteins before they pass through
the gut wall. It is suggested that this does not mean that the child has
to be overloaded with wheat and dairy products before using it. Formula
2917 Multienzyme is to be used as a fail safe and should be given
prior to taking food. It is only available from Klaire Laboratories and
is sold as Serin-aid.
Klaire Laboratories, 140, Marine View Dr, Suite 110, Solana Beach, California
92075
Tel: 001 858-350-7880/800-850-8358
Fax: 001 858-350-7883 www.klaire.com
K
L REICHEL MD PhD
It
seems that a majority of autistics have a problem with digesting proteins
or peptides. The opoid peptide from gluten, casein and gliadin have the
effect of reducing pain and increasing hyperactivity. These opiods are
relevant to the autistic syndrome as they modulate the central nervous
system and cause a condition that resembles that of schizophrenia. These
opiods inhibit brain growth and pruning of the brain during adolescence
before puberty. Normal brain changes will take place and therefore gluten/casein
free diets are very important during the early years of brain development.
Opiods permanently affect the permeability of the brain barrier. It is
therefore essential that blood tests using antibody screens against foods
are carried out to determine whether your child is allergic or intolerant
to such foodstuffs.
CANDACE
PERT PhD
There
are receptors present within the brain that bind to certain peptides that
flow within the blood. The opiate receptor, for example, is present and
this is what opiate peptides bind to in order to give pain relief to the
body. These opiate receptors are found within certain areas of the brain
namely the hypothalamus, the unigular and hypocampus. These receptors
are shared and used by each area of the body for example peptides released
by the gut are used to transfer information to other areas of the body
and therefore the receptors which they bind to are present not only in
the brain but also the central nervous system and the immune system. This
passing of information from one area to another is called chemotaxis.
If you cut yourself then these messages through peptides binding to receptors
will send out a signal for help and in turn the cut is surrounded by the
correct cells in order to help heal and protect the wound from infection.
Viruses can cause autism. The virus (a peptide chain) is very intelligent
and will bind to a receptor site where a harmless peptide could bind and
enter the cell this way. This is molecular mimicry. It is in this way
that viral infections take hold and can cause unbelievable damage if not
recognised by the bodys own immune system.
VICTORIA
BECK
Victoria
gave a wonderful talk on the opportunities we as parents have to address
the problem of autism. We are not alone and we are not helpless.
Never, never, never give up
Winston Churchill.
She
pointed out that autism has been in the past attributed to cold refrigerator
mothers, as an incurable psychological disorder that reduces sufferers
to second class citizens and as a lifelong disability. These statements
are clearly archaic. There is a lack of biomedical evidence to prove that
the cause of autism is genetic. Changes need to happen within the medical
and psychological world to enable us to discover the real causes of autism.
There are many individuals, parents and practitioners whose views and
findings have been dismissed.
Our children are not hopelessly predestined to fail. There
must be positive change that will give a chance for our children to succeed.
Get tough search for a way out.
We need a more logical way forward with greater efforts and research into
biology, physiology and science rather than psychology. We need to change
the premise and move from:
desperation to activation
fear to change
mythology to science. Adopt a new premise
- Look
at your child
- Chart
a road map
- Plan
interventions for change
- Implement
new beliefs
- Eliminate
sources of stress
- Use
knowledge and wisdom
- Network
with parents
- Ask
meaningful questions
- Look
for the light
Our
children are depending on us.
SIDNEY BAKER MD
PRIORITIES
There are a hundred things parents of autistic children can do, not only
in the biomedical field but in educational ways as well. Some have tried
lots of treatments and a number have a success rate of up to 30%. The
DAN Protocol looks at biological, neurological and immunological issues
but we do not need to be governed by such a vigorous protocol.
SECRETIN
This is a high priority, but the benefits will change from child to child.
There has been a 70% improvement on average from an open study. It is
simple and worth exploring. The time it will take to know all of the risks
is long. It is difficult to see which autistics will benefit most from
secretin. There isnt a pattern related to age, gender, and gut symptoms.
He suggested that it be used at least three times before giving up. Variations
do change from dose to dose with some children having good responses and
others not. Significant negative responses are rare. He did say that you
must explain to your child what is going on and to hold him/her tight
to you for each infusion.
YEAST PROBLEMS
One should consider this possibility in all children with chronic problems.
Antibiotic use, especially over the past ten years has a possible link
with yeast overgrowths within children who have used them repeatedly.
There is strong evidence that anti-fungals do work and nystatin is one
of the most effective.
Dr Baker has identified that there is a certain type of child that is
a good candidate for treatment round faced, beautiful, soft with
a cherubic presence.
No test can guarantee that the child will respond to anti-fungal treatment
but he recommended the organic acid test at The Great Plains Lab to identify
yeast derived metabolites. He also said that there is a likelihood of
a Herxheimer reaction and many GPs take the child off the anti-fungal.
This is a mistake continue with the treatment.
GLUTEN/CASEIN FREE DIET
Strong evidence supports improved behaviour on a gluten/casein free diet.
Dr Sidney Bakers advice is to use Paul Shattocks urinary peptide
test before you implement this diet, so you have a starting set of results,
implement the change in the diet and monitor every few months to see the
change.
FOOD SENSITIVITIES
Avoid foods to which the child is allergic or intolerant. Check IgG levels
using blood for antigen reaction.
SUPPLEMENTATION
B6, Mg, Se, Zn and Essential Fatty Acids,
ANTIVIRAL
Acyclovir benefited one out of three. His advice is to get a viral screen
done first to identify the viruses present. And definitely seek support
and guidance from your GP.
HIGH PROTEIN/LOW CARBOHYDRATE DIET
Clean up the diet, sugar free, additive free, colouring free. Loading
protein first thing in the morning is an important step with bacon, fish
etc. Dr Bakers suggestion is to give them dinner for breakfast and
breakfast for dinner. For more information check out www.smbaker.com
WALTER
HERLIHY PhD
How
does secretin work?
The stomach contents empty into the duodenum (small intestine) and acidifies
the intestine as the intestinal pH level drops. Receptors in the gut wall
recognise this and trigger the release of secretin into the blood system.
When the secretin comes back to the gut it triggers off bicarbonate release
which in turn trigger pancreatic enzymes to be released into the gut which
start digesting proteins. When tested with autistic children it was found
that pancreatic release is greater in these children compared with so
called normal children.
Repligen are running a number of trials using secretin at the Medical
Centre in Baltimore, The Royal Free Hospital in London and the Mayo Clinic
in Rochester, New York. They will be looking at all related gastrointestinal
issues before and after secretin use, such as gut permeability, opiods
in urine, secretory response (ie pancreatic), acid channels (ie a possible
release defect), and inflammation of the gut.
They will also look at weight, sleep, diet and appetite with the hope
of seeing greatly improved results in both social and communication skills
expressed by autistic children.
Secretin availability?
Fering is not currently available and the Federation of Drugs Association
has not approved secretin to be available in the USA. (There is a requirement
to fulfil market need for pancreatic function.)
The Solution is Secretin Repligen!
It has higher purity and is a synthetic not derived from pigs. For more
information see www.secretin-repligen.com
SUDHIR
GUPTA MD PhD
The immune system is our buit-in protection. It is interlinked in activity
and communication with the brain and gut through neurotransmitters, enzymes
etc.
The immune system has specificity and memory. It targets each virus and
when the bodys immune system produces an antibody it keeps it in
the body so it will trigger off an attack if the virus returns. The body
has a number of defence (white) cells:
B Lymphocytes
These make antibodies against the invaders.
- IgM
the first to hit a virus, it indicates an active infection
- IgA
these line mucosal surfaces and as we have 400m2 of mucosal epithelium
they are the largest of all lymphocyte sub sets
- IgE
these are associated with allergies and they will be elevated
if infection is insistent
- IgG
G1, G2, G3, G4 these are all antibodies against protein, (carbohydrates
go to G2)
T
CELLS
Thymus derived lymphocyte of which there are two main types. These cells
produce cytokines.
- CD8
kills viruses and virally infected cells
- CD4
helper cells, they help CD8 and have two derivatives:
- TH1
helps with defence against viruses, protozoa and fungi
- TH2
helps B cells produce antibodies
NATURAL
KILLER CELLS
These kill off the infected cell. This cell will hit the infected cell
before the T Cells.
MACROPHAGES AND MONOCYTES
Help lymphocytes respond.
PLASMA PROTEIN
Reduces inflammation.
Autism is now seen as a multi-faceted disease with a genetic factor, an
immune factor and an environmental factor. The immune system within autistics
shows a tendency to upper respiratory tract infections, increased allergy
and increased gut yeast infection, and the presence of parasites in some
cases.
Gupta has found a link with serum immunoglobulin in autistics. They have
increased or elevated levels above the norm values in IgM and IgE and
lowered levels in IgA and IgG1 with low antibody response to protein antigens.
It is also apparent that CD3 and CD20 are reduced and there is a low response
from TH1 as its levels decrease and its brother TH2 increases. If TH1
drops then the gut is open to viral infection and fungal overgrowth.
Therefore: Low IgA leads to poor gut protection which leads to absorption
of antigens. This results in lymphatic hyperplasia, increased allergens,
auto-immunity and a breakdown in myelin-based protein. Zinc affects the
structure of chromatin, affects histone and condenses chromatin so it
is vitally important in building the immune system. Thymic hormone makes
the T cells and if there is zinc deficiency this will reduce the thymic
hormone which results in a decrease of T cells, CD8 cells and B cell deficiency.
ANDREW
WAKEFIELD MD
Dr
Andrew Wakefield, based at the Royal Free Hospital in Hampstead, London
has noted a new sub-group of autistics. Staistics indicate a 275% rise
of autistic traits over the last ten years in the USA a trend mirrored
in the UK. He has identified that there are dramatic increases in gut
disorders in these children. Lymphoid nodular hyperplasia is apparent
in a large number with a suppressed immune system. The infection is clearly
visible in the follicular dendritic sites. From his studies on the new
autistics subgroup he has seen that:
- CD3
is lower than normal in 65%
- CD4
is lower than normal in 51%
- CD8
is lower than normal in 47%
- B
CELLS are lower than normal in 12%
- NK
CELLS are lower than normal in 16.3%
- Only
16% showed normal values
He has concluded that there is a greater risk of autism through exposure
to the MMR vaccine and chicken pox especially if the parents have a number
of allergies or the mother was exposed to measles during pregnancy. He
again made a link with the TH1 and TH2 cells in that a viral infection
pushes the TH2 cells to increase, which in turn opens the bodys
immune system to environmental allergens.
STEPHEN
KAHLER MD
For
me this was the most intriguing talk of the conference. Dr Stephen Kahler
spoke a great deal of sense. It recharged my spirit with fight and enthusiasm,
for which I thank him.
Genes underlie all biology including behaviour. The biochemical processes
that are 100% inherited are also 100% treatable.
Whats Biochemical about Autism?
All behaviour and neurological functions have a bio-chemical basis: neural
transmission, receptors, responses, memory etc. There is no suggestion
of major inherited immune deficiency.
Therefore, do genetic aspects of immune response play a role?
What are the acquired immune problems?
Stephen Kahler has pinpointed that there are a number of gastrointestinal
aspects such as, disturbed function, coeliac disease, wrong amounts of
digestive juices, poor response of pancreatic enzymes, poor liver function,
bile deficiencies which influence bacteria dwelling in the gut and poor
metabolism and excretion of toxic compounds. He also indicated that phenolsulphurtransferase
P was a recessive gene disorder that is likely to be inherited with a
25% risk of recurrence in the child. It is important that doctors study
the family history and the role of milk as a possible allergen in young
children. He would like to see publications and studies on:
- Sulphation
deficiency
- Immune
system dysregulation
-
Kutapressin
Things that can be measured and are they the things that are important?
Hyperactivity and autism have similar fatty acid deficiency. Biochemical
disorders can be treatable. Nothing in autism is incurable. Brain cells
are not being killed off in the early years. It is an approachable problem
that can be resolved!
He listed a number of areas to consider in looking at the whole autistic
picture.
- Examine
their genetic disposition
- Look
at the environmental component affecting them (ie vaccines and pollutants)
- Determine
the link between absorption of bowel products and autistic traits
- Monitor
their response to a gluten/casein free diet
- Keep
a videotape diary of their development
- Study
their behaviour responses to dietary change
- Look
for other toxins ie LSD
- Monitor
siblings closely as they are susceptible to developing autism
- New
children must be monitored carefully
- More
tests needed on blood samples, urine and stool checks
- Screen
at birth to identify children at risk ie adverse reaction to immunisation
- Identify
children at high risk prior to immunisation
Parents
are in the best position as they know the child better than the doctor.
Believe what you see dont see what you believe!
The name is not the blame, always look for the cause.
If you dont eat you dont think! Remember doctors dont
know everything!
WOODY
R Mc GINNIS MD
NUTRITION
Nutrition means eat, digest, circulate.
Signs of nutritional deficiency
- Abnormal
stools (diarrhoea therefore poor absorption)
- Fatty
acid deficiency, thirst, infections
- Fungal
overgrowth
- Rash
(especially around rectal area and whitish tongue)
- Food
allergies (black eyes, red cheeks or ears, nasal congestion)
- Zinc
deficiency (white marks on fingernails, asthma and frequent colds)
- Probable
vitamin B6 deficiency
- Magnesium
deficiency (hyperactivity)
- Poor
stomach acids
- Probable
vitamin B6 deficiency
TREATMENT
STRATEGY
- Low
glycemic
- Good
fats
- Organic
- No
excitotoxins ie artificial sweeteners
- Careful
with the copper
- Supplements
with Zn (15mg at night), Mg, B6 (P5P), Ca, C and E
- Balance
Zn with Mn
- Fatty
acids good sources are evening primrose oil, flax oil, and cod-liver
oil
- Vitamins
A, D, E and K
MARY
MEGSON MD
This
was a strong talk on vitamin A and the benefits it can bring to an autistic
child. Cod-liver oil was the number one source recommended.
The gut can become seriously inflamed due to gluten allergy and quite
possibly due to an auto-immune response to measles. Vitamin A, D, E and
K (fat-soluble) are important for this, along with Omega 3 essential fatty
acids.
Vitamin A is good also for vision, cellular growth and differentiation,
immune system especially T cell activation, gene expression transcription
and modulates metabolism.
KENNETH
A BOCK MD
Neurotoxicology
Two viruses at the same time will overload the immune system and if the
immune load is too high we see:
- Heavy
metals
- Abnormal
liver detoxification
- Essential
fatty acid deficiency and zinc deficiency
- Vitamin
A deficiency
- Viral
infection and auto-immunity
The
PROBLEM
- The
presence of heavy metals.
- One
or more toxic chemicals, ie pesticides etc
- Liver
detoxification
If
the same exposure to toxins perinatally gets into the brain then direct
injury to the brain can occur in the foetal stage as these cells release
antigens into the body which sets the stage for autistic spectrum disorder.
These toxins can cause suppressed immune responses and in turn leads to
a greater number of ailments. The dysregulated immune system then does
not act as it should and the TH1 and TH2 cells ratios change. There is
then an increased chance of allergies and infection. The transfer factor
reestablishes the correct balance of TH1 and TH2 to reinstate the immune
mechanism. A Polyvalent Transfer Factor taken orally at 200mg a day can
aid the problems associated with measles virus, allergies, asthma, dermatitis
and ulcerative colitis.
Jonathan
Toomey
My concluding comments
It
was great to see such a wide selection of speakers at the conference and
I, as a parent, certainly did learn a great deal from it. I was disappointed
that questionnaires were not provided for all parents with autistic children
to be completed at the conference as I feel this would have provided further
information important for data research. I would also like to see a centrally
co-ordinated body, overseen by the Autism Research Institute in San Diego.
They would then set up a structured research team which would involve
all of the worlds leading researchers and doctors (many of whom I assume
were present at the conference) and give them structured guidelines in
further exploring the field of autism. The team would be given stringent
guidelines and funding to conduct controlled studies in their own field
but to link, like a web, all of these fields together. I dont know
if this is happening at the moment but it would certainly lead to a faster
solution for our childrens problems.
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