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Light at
the End of the Tunnel
A Story About Hope And Recovery And Autism
by George and
Tory Mead
For more articles on disabilities and special ed visit
www.bridges4kids.org.
Here are the tears of things: mortality
touches the heart - Virgil
Part 1
Anyone who has lived through the horror of watching a loved
child fade slowly, in shades of gray, into a ghost, knows the
devastation of autism.
In September of 2000, in the early morning hours, we lay
awake, staring in the dark. "I want you to take as much video
of William as you can," Tory said.
"Why?" I asked, knowing the answer.
"Because we are losing him."
Indeed, as each day progressed we appeared to be losing
another small piece of the child we knew and loved. What was
left was a living, breathing shell of the laughing interactive
child we knew. It appeared that within a few weeks, nothing
would be left.
This is not a story of grief, but of hope and recovery. To
anyone who is lying awake, wondering what the future holds,
know one thing: there is hope.
With every day, new discoveries are being made about the cause
and treatment of neuro-behavioral disorders previously thought
"incurable" and "life-long afflictions." The few health care
providers, who were treating the children as biomedical
patients and justifiably offered cautious opinions about the
outlook for children with spectrum disorders, are now openly
referring to dramatic "recovery" for a percentage of the
children, and significant improvement for many, if not most,
children.
The first step towards recovery is to discard the traditional
concept of "autism" as an architectural (meaning
inherent-in-the-brain structure), and as a psychiatric
disorder under the Diagnostic and Statistical Manual of
Psychiatric disorders (DSM4). These diagnoses see autism and
"spectrum disorders" as hopeless, and caused by some
mysterious genetic factor. The fact that most, if not all,
late onset autism occurs in the depths of the childhood
vaccine schedule is seen as entirely coincidental. The fact
the majority of the children suffer from extraordinary
metabolic, intestinal, immune and allergic syndromes is seen,
again, as a coincidence.
Recent developments in medicine clearly show that, with
biomedical intervention and early aggressive educational
therapies, children can and do make dramatic progress toward
achieving their full potential, often fully recovering. Now,
in changing the paradigm, what was once viewed as an
absolutely hopeless affliction, is now being seen by a small
group of educated health care providers as a complex metabolic
system breakdown. By treating each system, by rebuilding
immunity, and addressing the body’s metal metabolism issues,
gradual change and improvement is possible.
It is essential not to lose hope or purpose. It is also
essential to rely heavily on what structure of faith or Higher
Power you look to, for the will to carry out the job ahead of
you. We have called this ordeal over the last two years
"falling down the rabbit hole" and "life in war time". Both
metaphors aptly describe the initial sense of confusion and
unreality that accompany the early diagnosis.
WILLIAM
We, of course, feel William, along with his sister, are the
most beautiful children on earth. William was a model for
Pottery Barn Kidsä . William’s childhood health was
essentially normal for the first two years of his life; with
the exception that he had what we were told was "recurrent
bronchylitis" and recurrent ear infections. These conditions,
which were characterized as "normal" for kids, and "what the
kids are going through right now," resulting in William having
15 courses of antibiotics by the time he was 18 months old.
Following his two-year vaccinations, William’s health appeared
to sharply decline. He began to have rampant diarrhea (giardia,
we were told), inexplicable sores on his back and chest ( flea
bites, we were told) and he gradually lost weight. He
developed what we later learned were "self-stimulatory
behaviors," or "stims." He was rocking, twirling; toe-
walking, clenching his teeth, squinting and grimacing. He
would stand in the corner for hours, laughing to himself.
WHERE WE BEGAN
Like many families, our introduction to autism came via a
hearing test. During the summer of 2000, William gradually
grew unresponsive, unwilling or unable to play with his peers,
and focused on a few small toys. Contrary to stereotype,
however, he was, and remains, a warm and loving child. Late
that summer, his teachers recommended a hearing test, and in
October we took him to Oregon Health Sciences University. A
specialist told us that William’s hearing was good, but that
he would need to be evaluated at the "autism clinic." We
remember our heads swimming and a cold sense of dread falling
on us at the words "autism clinic." We asked the specialist if
William would be able to fall in love, if he would experience
emotions like empathy and sympathy. Her only answer was:
"that’s a good question".
THE DIET
In passing, one of the therapists at OHSU mentioned that some
of the children "responded well" to casein and gluten free
diets.
It seemed odd to us at the time that diet would play a part in
a neuro-behavioral disorder. How much and why, have been among
the most incredible revelations in this journey. As we set out
in the late afternoon, after the evaluation, we felt a
terrible sense of loneliness, isolation and grief. There
seemed to be no answers to this problem, and little if any
hope of finding them.
The next day we started the diet. We removed every kind of
wheat , rye, spelt, barley or oat product from our house. Many
weeks would go by before we had identified all of the products
containing gluten. We discarded all dairy products. As we went
forward, we discovered landmines in even the most "innocent
"foods. Processed sugar, for instance (not a good idea in the
first place ) contains trace amounts of gluten as a drying and
smoothing agent. Almost all commercial spices contain gluten
as a smoothing agent. We threw out and gave away garbage bags
full of food and spices.
To our great surprise, William’s eye contact improved within
three days. His bowel movements, which had been terrible for
months, solidified in ten days. His self- stimulatory behavior
decreased within a month. We knew that something, which is an
"organic brain disorder," would not be responding to diet. By
six months on the diet, William made up 21 months cognitively,
but still had scattered deficits.
In late November of 2000, the Northwest Autism Foundation held
the first "OASIS" conference. This was the first conference of
its kind in Oregon, and among the first on the West Coast. The
conference was free, and focused on the subject of biomedical
treatment of autism-related disorders. We decided Tory should
attend. She returned, carrying a banker’s box full of books
and literature, and supplements.
We have spent the subsequent year and a half reading,
searching the Internet. Contrary to what you will hear from
"mainstream" healthcare providers that the Internet is full of
quackery, it is the most valuable tool available to the parent
of the newly diagnosed child. It is a link with parents and
brave health care providers. Unfortunately, "mainstream"
doctors have not been very supportive or helpful. Fortunately,
we found a pediatrician who, for many years, has thought
outside the box on issues of vaccination and childcare and he
referred us to a doctor who has been bravely practicing
"alternative medicine" for many years.
A Story Of Hope And Recovery
Part Two
We decided to have William tested and this is what turned up:
Seven times the allowable reference range for mercury (the
reference range is 1-3, William had 22)
Myelin basic protein antibodies (William’s immune system was
attacking his own brain tissue)
Immune dysfunction
Yeast (Candida) overgrowth
Elevated Measles titer
Dramatically low Magnesium and Zinc
Elevated Copper
Extremely low IGg antibodies (plasma)
Malnutrition
All of these findings are "classic" markers for the autistic
child. In children with ADHD/ADD or Pervasive Development
Disorder-Not Otherwise Specified ( PDD-NOS) the clinical
findings may be less dramatic. They are, nonetheless, likely
to be present in one degree or another. Recent findings have
demonstrated deficiencies in essential metabolic processes in
99% of children on the spectrum (all neurobehavioral
disorders). Despite these findings, very few clinicians have
even bothered to ask why the autistic children seem to have
these dramatic and similar lab presentations.
OCKEM’S RAZOR
William of Ockem was an English medieval scientist who first
observed that, in weighing competing causes for a scientific
phenomenon, the hypothesis with the least amount of variables
was usually the correct one. He described cutting off
extraneous theories and ultimately arriving at the core
solution. Put another way, the scientific theory, which has
multiple factors, is less likely to be truly causative than a
theory, which has, at its root, one simple explanation. This
process has been called "Ockem’s Razor." Thus, in analyzing
any scientific phenomenon, it may be of value to look for the
solution that has the least amount of variables.
In the case of autism spectrum, recent developments suggest a
simple theory: a group of children are predisposed, either
genetically or through environmental insult, with a lack of
defense mechanisms to deal with heavy metals and other
environmental insults, in particular mercury. All but one of
the childhood vaccines until recently contained a preservative
known as Thimerosal, which is 49% mercury, by weight.
Thimerosal has been listed for years as a pesticide with the
EPA. Mercury is the second most toxic substance on the planet
after Uranium. The children were exposed via the vaccine
schedule to 237.5 mcg . This amount greatly exceeds the EPA
allowable amount.
Recent studies by the Pfeiffer Clinic, led by Dr. Bill Walsh,
indicate that 99% of affected children show significant
deficiencies of Metallathionein (MT). MT is a protein, along
with glutathione, responsible for detoxification, especially
mercury. It is also the principle transporter of zinc
throughout the body. MT is present in the gut and in the blood
brain barrier. A number of studies have been conducted on
genetically altered mice, whose MT factor has been removed.
These studies are significant in many different respects.
Perhaps, most significant is the inability of these mice to
process heavy metals and the complete deterioration of their
immune response.
The good news is that there appears to be the possibility of
restoring the MT system. This therapy, along with enzymes, and
glycoproteins, has shown dramatic effect in reversing the
effects of the exposure and to improve immune functioning.
In short, it appears that some children have a predisposition
to reduced levels of MT. Whether this is genetic or the result
of some intrauterine insult is still unclear. What is clear is
that, despite representations to the contrary, both industry
and the government have known for years that thimerosal is
extraordinarily toxic. As the controversy continues more light
will be shed on the role of industry and government in
covering up this information and in seeking accountability. As
the late Supreme Court Justice Potter Stewart said, "sunlight
is the best disinfectant".
WILLIAM’S TREATMENT
The Gut
Piece by piece, we began to treat each of the issues,
peeling away the skin of the onion. First, we had to get the
gut "in order." The conventional wisdom is that any serious
effort in treating the mercury or immune issues should begin
with the gut. Unfortunately, many of the gut issues are
difficult to resolve without removing the mercury and getting
the immune system intact. A leaky swollen gut cannot
effectively remove heavy metals. Similarly, a compromised
immune system cannot effectively combat serious gut bugs.
Given the persistence of the "bugs" (like Clostridia Difficile
and Candida Albicans) it is unlikely you will get complete
resolution of the issues right away. We placed William on
anti-fungals ( Diflucan, Ketokonazole, Nizoral, and Nystatin)
We also placed William on Yeast Control, grapefruit seed
extract, and garlic oil. No one treatment is completely
effective. The most important aspect of treating gut bugs is
rotating the treatment.
We also use probiotics. These are beneficial microbes, which
combat overgrowth of "bad" bugs. Although it is somewhat
controversial, using Sacchromyces Boulardi, a form of yeast,
which excretes toxins to other yeasts, has been reported as
effective. The trick is not to use it exclusively for a long
period of time.
Most important, yeast and gut bugs will respond very favorably
if you starve them. Indeed, it appears that the most effective
long-term solution to killing gut bugs is to address the diet.
For William, this meant that, in addition to limiting Casein
and Gluten, William is on a high protein, low carbohydrate
diet. We avoid potatoes, white rice, all sugar, fruit juices
and dried fruit. We have chicken, beef, beans (green, pinto,
black, garbanzo, white and all legumes). We also have started
to use alternative flours such as Amaranth, Quinoa and
Tapioca. These excellent flours are bean, not grain flours and
are extremely high in amino acids and protein. Finally, we
have substituted Stevia for sweetener. Stevia is an herb from
South America, which has been used for centuries. It is many
tens of times more sweet than sugar (a little goes a long
way!) and is not metabolized as sugar.
A final note on diet. One good signal your child may be
suffering from yeast is a craving for sweets or carbohydrates.
If they throw fits because they are not getting fries, or if
they have tantrums because they are not getting a fruit punch
drink, rest assured, it is because they are, in the words of
the street "Jonesing" for some sugar. The yeast is telling
them it needs to be fed, and it is making them feel
uncomfortable. Anyone who has tried quitting cigarettes has
had a pretty good taste of this experience.
Finally, we have supplemented with a concentrated fish protein
which has been used very effectively to heal gut lesions and
decubitus ulcers. As the yeast is removed from the gut, the
fish protein promotes healing and growth of new intestinal
tissue.
Part Three
There has been a lot written about yeast or Candida
overgrowth. Less has been written about yeast die-off or "Herxheimer’s
Reaction." Ironically, the "die-off" is the most visible,
lasting and unpleasant manifestation of treating the gut. It
is also the best signal you have nailed the problem on the
head. First discovered by Dr. Herxheimer in connection with
studies involving syphilis, of all things, it was observed
that symptoms worsened significantly with treatment. Many
microbes or single celled animals, when they die, release
their toxins into the system. In many cases it is the toxin,
and not the microbe itself, that causes the illness. Although
yeast causes gut deterioration ( like English Ivy destroying a
brick wall), it is the toxin Gliotoxin, which is the cause of
many immune and behavioral problems.
Yeast, as any beer drinker will tell you, is also the main
mechanism for converting sugar to alcohol. Many sufferers of
yeast report a drunken or foggy feeling. This is not
surprising because yeast produces alcohol, which goes straight
into the blood.
Gliotoxin, which has been studied largely in connection with
organ transplantation, is known for its extraordinary immune
suppression properties. It is also known to attack the central
nervous system and to cause premature cell death. It is, in
short, a very bad actor, which has not been very well studied.
Yeast is one of the main causes of final system breakdown and
ultimately death in AIDS patients. Animals injected with
concentrated gliotoxins suffer seizures and can die.
When you start treating for yeast or clostridia, these toxins
will be released into the child’s system, through a leaky gut.
These can cause problems such as aggravated behavior,
diarrhea, drunkenness and withdrawal symptoms. These are good
signs. Herxheimer’s can vary from a few days to upwards of
several weeks. Do not be discouraged! You are on the right
track!.
It is possible to treat the symptoms of Herxheimer’s, often
with fairly dramatic results. Studies have shown that
gliotoxins attack the central nervous system. There is also
evidence that Vitamin C , combined with either Alka Seltzer
Goldâ or Tri Salts ( a mixture of calcium carbonate, sodium
bicarbonate and potassium carbonate) seems to be a very
effective way of neutralizing the gliotoxins and preventing
acidosis of the blood. We have seen William calm down within a
matter of two to three minutes after getting 250 mg of Vitamin
C mixed with Tri Salts (bicarb) or Alka Seltzer Goldâ Although
it is also controversial, sauna, or hypothermia, also seems to
help with die-off reactions. Lots of water to flush the system
is also a good idea.
Chelation
Perhaps no other single therapy, with the possible exception
of intravenous gamma globulin (IVIG), is as controversial, and
filled with dread as chelation. In short, chelation is the
process of pulling heavy metals out of the system using
chemical compounds. The term chelation comes from the Greek "chela"
or claw, for the shape of the molecules. In layman’s terms,
the molecules, which have sulfur atoms in them, attach to the
mercury with a stronger bond than the surrounding atoms. The
resulting molecule is then evacuated.
The principal agents used for chelation are:
· DMSA
· DMPS
· EDTA
· Alpha Lipoic Acid
Chelation with these agents is safe and should be done under
the supervision of a qualified health care provider. Beginning
in the 1940’s, DMSA was used on thousands of inner city
American children for chelation of lead. The kids are now in
their fifties and sixties, and have shown no apparent
long-term effects of using DMSA. Consequently, DMSA has been
approved for childhood use for decades for lead.
DMSA is also an effective, if somewhat slower chelator of
mercury. The controversy arises from treating a supposedly
lifelong disabling mental disease with a chelating agent. The
fact of the matter is that with removal of mercury, the
children show improvement, sometimes dramatic improvement. It
has also been shown that autistic children do not excrete
mercury during the fist 18 months of life. Consequently, they
are carrying the entire load of the mercury injected into them
as a result of the vaccine schedule
It is essential, in our view to get the heavy metals out of
the children to begin the process of accomplishing homeostasis
and immune function. However there are several issues that are
inherent in the use of chelators, especially DMSA and Lipoic
Acid (ALA). Chelation, is the proverbial "Faustian bargain."
You have to make a deal with the devil to get progress. DMSA
and lipoic acid are yeast foods. The more you chelate, the
heavier the yeast is going to be. It is essential you get the
gut issues resolved before beginning the chelation. An
unhealthy gut will not rid itself of toxins effectively.
However, the gut will not be completely healed until the
mercury is removed. You see the problem.
Second, there is the issue of the blood brain barrier. It
appears as though neither DMSA nor DMPS will cross the blood
brain barrier (BBB). This barrier , which protects the brain,
is semi permeable, and will not allow molecular structures of
a certain size, or larger, through. Consequently, it appears
that DMSA cannot remove mercury from the brain. Alpha lipoic
acid can and will cross the BBB. Mercury will also attach to
ALA. ALA does not appear to be strong enough to remove mercury
entirely. The theory is that by using ALA and DMSA together
you will be able to pull mercury out of the brain and the DMSA
will take it out of the body.
In the end, we have been pulling large quantities of mercury
out of William. In one year William dropped from 22 to 12 on
the scale. We continue to periodically chelate him, although
yeast continues to be a problem when we do.
The lab tests will frequently show other dangerous heavy
metals such as antimony, arsenic, nickel and lead. Chelation
works for all of theses metals as well.
Enzymes and Healing
About 20 years ago, Norwegian physician Kalle Reichelt, M.D.
began studies of the digestion of autistic, schizophrenic and
bi-polar children. At the same time, at the Sunderland
University in England, Paul Shattock began work on the blood
of autistic children. They found, almost without exception,
abnormal digestive processes, and especially of casein and
gluten. In particular they found abnormal by-products called
peptides in the urine of affected children. These peptides
were almost identical in molecular form to opiates like
morphine. It was determined these substances could cross the
blood brain barrier and trigger the "opiate receptors." i.e.
receptors in the brain. If an autistic child appears stoned or
far away, it is because they are being bombarded by peptides (gliadin
and casomorphins). Where do these peptides come from?
Normal digestion of casein and gluten requires an enzyme
called Di Peptyl Peptidase IV (DPPIV). Heavy metals, as well
as yeast interfere with the production of DPPIV. Incompletely
digested gluten and casein do not break down into the
fundamental amino acids available to the body. Instead they
become toxic peptides. Because of the leaky gut, the peptides
go straight to the brain and interact with the opiate
receptors there.
There are enzyme supplements, which are available to assist in
digestion. These should not only include DPPIV, but also
Lipase, Sacchrydase, and a host of other enzymes. Of course,
this area is very new, and there are new discoveries being
made about enzymes every day. William showed dramatic
improvement after we placed him on something called the the
Enzyme Complete with DPPIV products.
Immune Treatments
Few of the issues confronting these children are scarier, and
fewer still are more daunting that the immune system
breakdown. By this, we mean the myelin basic protein
antibodies , and the complete breakdown of the gamma globulin
system. In effect, the children have the same immune system
profiles as AIDS patients. Indeed, children with autism are
using many of the treatment protocols available and used by
AIDS patients, such as N-Acetyl cysteine, transfer factors
etc.
The presence of autoimmune antibodies means the children’s
immune system has gone haywire. Their own antibodies believe
the cells of the nervous system, in particular the myelin
sheath, are external invaders. The body then sets about
attacking its own cells. Another well know form of this
process is rheumatoid arthritis. Certain forms of asthma are
part of this process.
The essence of recovering the immune system is to re-educate
the body, and re-introduce immune factors into the system,
that appropriately identify invaders and stop the
inappropriate responses. The challenge with these treatments
is they frequently involve blood products, or transfer factors
from other species. The treatments are both expensive and
controversial
Because of the fact William had almost no IGg or
immunoglobulin factor g, we decided to have intravenous gamma
globulin via transfusion. Aside from the trauma of getting an
IV into an autistic child, the inherent threat of blood borne
pathogens in any blood product is scary. We also used a
pathogen specific transfer factor directed at measles. William
responded dramatically. He threw up a gelatinous mess and his
health seemed to improve overall. He no longer had coughs and
recurrent asthma or bronchylitis. Most dramatically, the next
time we checked his blood for myelin basic protein antibodies,
he was clean. William’s measles titer also dropped. We managed
to rebuild a portion of his immune system, which has proven
very difficult to fix. William managed to beat one of the
toughest issues facing the children!
Part 4
Because of recurrent diarrhea and gut inflammation, many kids
have demonstrated classic malnutrition symptoms. The essence
of good health is good nutrition. The essence of good
nutrition is providing the body with the elements ( Zinc,
Magnesium, Selenium, Molybdenum, and others) fatty acids (
omega 3 fatty acids and others) and Vitamins ( A, B6, B12, C,
E, and others) that it needs to maintain optimum function. A
deficiency in any one of these substances has a chain reaction
effect on the entire system. For instance, the absence of
zinc, affects the uptake of vitamin A as well as the
functioning of the immune system. The absence of Vitamin A has
an entirely different set of symptoms associated with zinc
deficiency. Without the presence of zinc in the liver, retinol
is not produced and vitamin A is not metabolized.
Affected children do not have good intestinal absorption
function. Therefore, a substantial number of the nutrients
"normal" people take for granted are not absorbed. Laboratory
tests for children with autism, ADHD / ADD and other spectrum
disorders almost invariably show extremely low zinc, extremely
high copper, and very low magnesium, and other trace elements
needed for metabolism. On top of this, the children are on an
extremely restricted diet, at least to begin with. It is
therefore essential to rigorously address the deficiencies
with supplements. It is also essential the supplements be
casein and gluten free.
There are numerous studies, which show that supplementation
with B2, B6 and B12 as well as trace elements will have
significant benefits for the child with autism and ADD/ADHD.
Some of the supplements are packaged specially for the
autistic child. Typically children will have a supplement list
which will include:
Vitamins B2, B6 and B12
Vitamin C
Zinc
Magnesium
Omega 3 fatty acids
Molybdenum
Selenium
We supplement William with all the minerals, especially zinc
and magnesium. Transdermal supplements also appear to get
minerals in the kids.
Finally, Dr, Rosemary Waring, a research scientist and
physician in Great Britain has found that the children suffer
from problems of sulfation. In other words, the body’s natural
detoxification pathways, heavily moderated by sulfur are
deficient. Studies have shown that supplementation of sulfate
minerals can have a dramatic effect. For instance, bathing
with magnesium sulfate (Epsom Salts) can have an extremely
beneficial effect. Similarly, children who get transdermal
zinc sulfate also seem to do better. Sulfation is also greatly
aided by molybdenum and selenium. Lastly, transdermal
glutathione is an essential part of the sulfation chain.
Glycoproteins
We were well into our recovery program with William, who had
been making steady, but sometimes, slow progress. The idea of
"progress" with a supposedly lifelong, incurable disease is
certainly an interesting one. William began seeing a
naturopath who had quietly been treating children for several
years with glycoproteins. Without getting into complex
biochemistry, glycoproteins are molecules on the outside of
the cell wall. They were discovered in the 1950’s, and for
many years were called "ornamentals" because the scientific
community did not understand what they did. They must
therefore have simply been "ornamental,"or useless. Several
decades later, it was discovered these molecules, of which
there are eight essential types, combine in 1.2 million
different combinations, and are the principal way cells tell
each other what to do. Subsequently, scientists learned how to
"synthesize" glycolproteins, which occur naturally only in
vine-ripened fruits and vegetables.
Without an adequately functioning glycoprotein system, you can
pour supplements down your child. If the cell doesn’t know it
needs zinc for instance, it will not take it up to manufacture
glutathione. Glycoproteins help this function. Glycoproteins
are safe, because they are what the body uses to metabolize.
They are also essential to maximize metabolism.
We placed William on glycoproteins and within two weeks he was
putting on weight ( he is now squarely in the middle of his
height and weight percentiles). He lost the pallor and
chalkiness and his expressive speech and generative behavior
increased dramatically. William has now started imaginative
play and actively interacts with his sister. He appears, for
all purposes, to be doing a lot of the "chelation and
sulfation" work himself.
In short, we believe the use of glycoproteins has been an
integral part of William’s progress. Those children we know
who have started them have also shown dramatic progress.
THE ROAD AHEAD
We plan to continue giving William the best chance at a full
recovery. The road has been filled with people telling us why
what we are doing will not work. To them we say that we would
rather have done something and found that it was not helpful,
than not to have done anything. Everything we have done seems
to have helped William. Because most of the therapies are
nutritionally-based, there is very little you can do which can
be harmful.
In the immortal words of the American poet, John Greenleaf
Whittier: "Of all sad words of mouth or pen, the saddest are
these: it might have been."
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