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Saving Eli
by Jim English
Eli was born a healthy and vibrant baby, welcomed
into the world and embraced by his overjoyed parents and two brothers
in 1993. Three years later Eli's family sat in silence as a team
of specialists announced that Eli was autistic. We'd known for some
time that something was terribly wrong, but hearing the words and
grasping their meaning remains a moment frozen in time, as all hope
of a normal life for our family seemingly slipped away.
When we asked about his long-term prospects, the
professionals tried to sound upbeat as they outlined our choices.
If we could afford therapy, and if Eli responded, and if everything
went well, we were told that Eli might be able to speak
a few words…eventually. Eli might be able to live
at home…for a time. And Eli might eventually be able
to move in to a supervised group home as an adult, and possibly
even hold a job of sorts some day…say sacking groceries. These
are not the words a parent wishes to hear. Eli is my son.
As the shock slowly settled in, my wife and I
tried to sort through our options. Early intervention is critical
in cases of autism: the earlier one can begin to affect therapy
the better the chances for a happy outcome. In our case, both my
wife and I initially rejected behavior modification. And though
fearful of making a mistake, my wife agreed to try a nutritional
approach to helping Eli.
In a matter of days we had gathered enough research
on alternative therapies to begin to take some small steps towards
helping Eli.
: Our nights,
like those of many parents dealing with this issue, were a constant
struggle as Eli could not sleep for more than a few hours. With
a small dose of melatonin (0.5 to 1.5 mg) before bed time, to our
amazement and relief, Eli was soon sleeping through the night, and
we began to catch up on our rest.
: While not
clearly understood, researchers know that serotonin pathways are
disturbed in autism, contributing to sleep disorders and mood. Tryptophan
has been shown to help but has been banned by the FDA since 1989.
We found that 5-HTP helped immensely, calming tantrums and increasing
communication with our son.
: Neither
of these compounds tastes very pleasant, which was a major problem.
Our son, like most autistic children, was very sensitive to taste,
and his choice of foods was very restricted: oatmeal, bananas, chocolate
and fruit juice; all other foods were rejected. Whenever we slipped
B6, magnesium and other B vitamins into his food we found that any
alteration in the expected taste would result in the immediate rejection
of the food and a tantrum.
: As with melatonin,
the benefits of DMG were almost immediate. Within three days of
diagnosis, I spoke with Bernie Rimland, Ph.D., a gifted clinical
psychologist who specializes in the nutritional treatment of learning
disorders. Based on his recommendations, I gave DMG to Eli. Three
days later my wife and I ordered some takeout at a fast food drive-through.
After giving our orders a small, sweet voice from the back seat
suddenly piped up, 'Kids meal, cheeseburger, ice-water.' The hair
stood up on my arms, and barely moving, I glanced sideways at my
wife to see that she, too, was struggling to hold back the tears.
Not only was this a breakthrough in language, but it was also the
first time our son ate any food other than his limited repertoire.
From that day forward, cheeseburgers, fries and ice-water became
not only a source of food for our son, but also an important part
of his road to recovery. Whatever works.
: Eli's
language continued to improve dramatically, but still we were faced
with getting B vitamins into his diet. One day, while editing an
article for VRP on homocysteine, I suddenly realized what I was
looking at. Methyl Caps, a premier VRP formula for heart health
and homocysteine control, looked surprisingly similar to the nutrients
I was struggling to give my son. Methyl Caps provides B6, folic
acid, B12 and Betaine, also known as TMG or trimethylglycine. Intrigued,
I began to look through my collection of data, looking for clues.
I found that approximately 40% of children with autism have been
shown to suffer a disturbance in methylation, a process whereby
methyl groups are attached to proteins in the body. The effects
on body chemistry can be profound, as is seen in the control of
homocysteine, the amino acid implicated in heart disease.
Most intriguing was the TMG in Methyl Caps. Like
DMG, TMG is a sweet, almost tasteless nutrient. And like DMG, TMG
is a powerful methyl donor, but one providing three methyl groups,
not the two found in DMG. Best of all, I found that TMG, as found
in the Methyl Caps formula, rendered the B vitamins tasteless. Not
only was I able to secretly mix Methyl Caps into his foods, and
in relatively large amounts, but I could even get away with adding
the formula to plain water! Within days of this discovery, we were
able to keep our son on a constant diet of B vitamins, TMG and other
nutrients. The results were a steady and continued improvement in
his language, social skills, and overall development.
Today, as I write this, Eli is preparing to start the first grade
at the local school. He is full of life, and radiates love
and energy. He is as likely to be running through the library, chatting
up children and adults, as he is to be competing with his older
brothers for time on the home computer to play his games or surf
the internet looking for stories on the Powerpuff Girls or Pokemon.
He was the star pupil in kindergarten last year, and during summer
school, his teachers couldn't figure out why he was classified as
a special student. When I told them his story they couldn't believe
that he was ever anything other than a gregarious, affectionate
and life-embracing little boy.
Our family has been fortunate in a way that most
parents of autistic children can only dream of: we have our son.
I hope our success can in some way help as other parents struggle
to save their children.
Aside from possibly watching Dustin Hoffman's performance as an
autistic savant in the movie Rain Man, few people have been exposed
to the neurological disorder known as autism. This situation is
changing and public awareness is growing as the media, government
and medical authorities begin to recognize what has been painfully
obvious to the parents of autistic children, that this disabling
condition is on the rise. Incidence of autism has increased dramatically
over the last two decades, and it is now estimated that autism and
its associated behaviors occur in as many as 1 in 500 individuals.
(1) What was once a rare condition is now turning up with alarming
regularity in hospitals and school districts in the U.S., Britain
and other developing nations.
Autism is a disorder that affects boys four times more than girls.
Autism is referred to as a spectrum disorder because of the presence
of a wide variety of symptoms and behaviors that can appear in any
number of combinations. Symptoms generally appear before a child
turns three and can range from mild to severe.
Autistic children tend to avoid direct eye contact and may shun
physical touch due to heightened or abnormal sensory integration
responses to sight, hearing, touch, smell, and taste. They may also
fail to recognize facial and visual cues used to convey such basic
human feelings as anger, fear and happiness, contributing to unusual
responses to people and impaired social interactions with family
and peers.
Children and adults with autism can experience
difficulty with verbal and non-verbal communication, and may not
speak despite a high rate of comprehension for the meaning of familiar
words. Frequently autistic children may repeat or echo (echolalia)
spoken phrases directed at them, but remain unable to initiate or
maintain a conversation.
Many autistic children become intensely preoccupied
with objects such as trucks, trains and machinery. They may also
have a profound dependence on routine activities and meaningless
rituals, and exhibit a marked level of distress whenever faced with
a change in their patterns. Autistic children can also be prone
to repetitive body movements, such as hand flapping and rocking,
and self-injury. (2)
Diagnosing autism is complicated by the fact that many of the behaviors
observed are also present in other developmental disorders that
are collectively referred to as Pervasive Developmental Disorders
(PDD). PDD include Asperger's, Pervasive Developmental Disorder-Not
Otherwise Specified (PDD-NOS), Rett's Disorder, and Childhood Disintegrative
Disorder. Due to the complexity of sorting through these overlapping
behaviors, diagnosis is generally conducted by a multi-disciplined
team of specialists (neurologists, psychologists, developmental
pediatricians, speech/language therapists, learning consultant)
based on direct observation of a child's communication, behavioral,
and developmental levels.
Researchers are devoting considerable time and energy to understanding
the origins of autism. But given the wide range and severity of
symptoms, it is highly unlikely that a single specific cause will
be found. Despite the challenge, new research is beginning to shed
some light on factors contributing to autism and PDD.
Researchers working to decipher the genetic influences on autism
have found some evidence for gene involvement, but no exact mode
of inheritance has as yet been uncovered. Researchers know that
autism and its related disabilities can reoccur in families, suggesting
a highly complex, genetic basis that probably involves several genes
in combination. (3) Recent work by researchers at the University
of North Carolina suggests the discovery of a gene on chromosome
13 that possibly causes autism. 'For a long time autism was not
viewed as being a genetic disorder,' said Dr. Joseph Piven, director
of the university's Mental Retardation and Developmental Disabilities
Research Center. 'It has a high degree of heritability, confirmed
by twin studies that show a substantially higher rate in identical
twins, so much so that heritability is over 90%.' According to Piven,
families with an autistic child run up to a 5% risk of having a
second child with autism. 'The data are pretty overwhelming that
autism is strongly genetic, more so than schizophrenia or diabetes.'
(4)
Further support for a genetic component in autism
has been revealed in newly published research conducted by Patricia
Rodier, professor of obstetrics at the University of Rochester.
Rodier had previously noted that brain stem abnormalities in autistic
children were remarkably similar to the damage observed in animals
exposed to thalidomide. Her study identified variants of a gene,
HOXA1, found in autistic children. HOXA1 plays a central role in
the development of the embryonic brain stem. The altered HOXA1 gene
has been linked to disruption of cranial nerves in developing embryos,
which may help explain both the observed brain stem abnormalities
and impaired vocalization and communication common to autism. (5)
While genetic scientists attempt to isolate genes that contribute
to this disorder, other researchers continue to follow new leads.
Recent evidence indicates that environmental components such as
viruses, bacteria, environmental toxins and vaccines may trigger
autism in genetically susceptible sub-populations, affecting multiple
metabolic pathways and leading to disruption of the nervous and
the immune systems.
New research published in the July 2000 issue
of 'Journal of Child Neurology' has spurred investigation into the
involvement of bacteria in autism. Dr. Richard Sandler of Rush Children's
Hospital in Chicago conducted a study in which 11 autistic children
with painful gastrointestinal problems were treated with the antibiotic
drug vancomycin. Ten of the children showed improvement based on
neuropsychological testing, but the benefits faded shortly after
administration was discontinued. The theory being investigated is
the prior use of antibiotics kills normal gut-protective bacteria,
allowing intestinal infections that produce toxins that affect the
brain. More research on bacterial involvement in autism is being
planned.
The most controversial theory involves the role of vaccinations
in triggering the onset of autism, a not altogether new concept.
In 1964 Bernard Rimland, Ph.D., suspected a link between the DPT
(diphtheria-pertussis-tetanus) vaccination and autism, based on
responses from parents of autistic children following the publication
of his book, Infantile Autism. Many parents reported that their
children were completely normal until they received the triple vaccine
DPT shot, after which there was a marked deterioration.
More recently, data collected by Rimland and the
Autistic Research Institute has found that from the 1960s through
the early 1980s, children born autistic outnumbered children whose
symptoms first appeared at 18 months by a factor of 2-to-1. Then,
in the early 1980s after the introduction of the MMR (Measles, Mumps
and Rubella) triple vaccine, the ratio reversed; now the 'onset
at 18 months' children outnumber the 'onset at birth' by 2-to-1.
(6) (See Figure 1.)
U.S. cases of autistic children who behaved
normally before 18 months, vs those with no normal period. |
Autistic children frequently suffer from problems related to the
gastrointestinal tract. Some of these problems include immune dysfunction
and allergies, possibly caused by gut permeability, translocation
of undigested proteins and poor nutrient absorption. Many autistic
children also have poor control over bowel functions. These problems
underscore a gut-brain connection in autism, and the recent
excitement over the gut and brain hormone, secretin, hints at some
of the underlying factors. Secretin is a peptide hormone that, in
the gut, stimulates pancreatic secretion. After recent publicity
about a child with autism whose condition markedly improved after
a single dose of secretin, thousands of parents of autistic children
rushed to have their children treated with secretin injections.
Unfortunately a highly anticipated double-blind,
placebo-controlled trial of a single intravenous dose of secretin
in 60 autistic children (ages 3 to 14 years) found no difference
between the hormone and a placebo. It may be that a single dose
of secretin was too low to be of any benefit. Curiously, after being
informed of the results, 69 percent of the parents of the children
in this study said they remained interested in secretin as a treatment
for their children. However, researchers drew the conclusion that
a single dose of synthetic human secretin is not an effective treatment
for autism or pervasive developmental disorder. (7)
A new theory tying the role of genetics, vaccinations and gut-brain
hormones together links the onset of autism to the disruption of
the G-alpha protein, a protein that affects retinoid receptors in
the brain. A study of sixty autistic children suggests that autism
may be caused by inserting a G-alpha protein defect, the pertussis
toxin found in the DPT vaccine, into genetically at-risk children.
This toxin separates the G-alpha protein from retinoid receptors.
Those most at risk report a family history of at least one parent
with a pre-existing G-alpha protein defect, including night blindness,
pseudohypoparathyroidism or adenoma of the thyroid or pituitary
gland. (8)
According to the researcher, natural vitamin A
may work to reconnect the retinoid receptors critical for vision,
sensory perception, language processing and attention. More research
is needed, but given the current state of knowledge of this vitamin,
it would appear a safe therapy.
Parents of autistic children quickly become overwhelmed as they
search for a cure for their child's ailment. At this time there
is no cure for autism, and the sheer complexity of the disorder
makes choosing a treatment a frustrating task that is often more
trial-and-error than science. Some of the current available therapies
include:
1. Elimination Diets, designed to remove
foods containing gluten, casein and allergens from the diet is another
approach that has offered marked improvement in many autistic children.
2. Applied Behavior Analysis (ABA), pioneered
by Ivar Lovas in the mid-60s at UCLA, is a widely accepted form
of behavior modification used to teach autistic children helpful
behavioral management techniques.
3. Enzyme Potentiated Desensitization (EPD),
a method of immunotherapy developed by immunologist, Dr. Leonard
M. McEwen, in England in the mid '60s. The method involves desensitization
with combinations of a wide variety of extremely low dose allergens
given with the enzyme, beta-glucaronidase.
4. Rhythmic Entrainment Intervention (REI), a
musical therapy program which uses specific rhythmic patterns performed
on a hand drum to aid individuals with neurobiological disorders,
including autism and related developmental disabilities.
5. Drugs evaluated as treatments for autism have
produced very inconsistent results, and most possess serious side
effects. Naltrexone is a medication initially developed for the
treatment of narcotic or opioid dependence that blocks the action
of endogenous opioids at opiate receptors; endorphins are opiate-like
substances in the brain and are associated with pleasure (e.g.,
runners' "high," sexual activity) and/or an anesthetic-like
feeling. One theory states that autistic individuals have too much
beta-endorphins in their central nervous system. This theory is
that naltrexone blocks the action of opiate receptors, and thus,
reduces the level of endorphins. Some of the improvements noted
in autistic individuals who have taken naltrexone include: increased
socialization, eye contact, and general happiness; normalized pain
sensitivity; and a reduction in self-injury and stereotypic (self-stimulatory)
behaviors. (9)
According to Temple Grandin, Ph.D., a professor
at Colorado State University who has dealt with her autism and become
a highly respected expert on the disorder, many adults with autism
can be helped by the careful use of medications. Some of the newer
antidepressants such as Anafranil (clomipramine), Prozac (fluoxetine),
and Zoloft (sertraline) are often more effective in autism for controlling
racing thoughts, obsessions, and reducing anxiety. For controlling
aggressive outbursts in teenagers and adults, very low doses
of the new atypical antipsychotic drugs such as Risperidal (risperidone)
and Zyprexa (olanzepine) are often helpful. Depakene (valproic acid)
is sometimes useful for controlling aggressive behaviors that are
cyclical.
Grandin cautions that effective doses for many
medications in people with autism is often lower than for normal
people stating, "The risk of side effects must be weighed against
the benefits of the medication. A good rule of thumb is that an
effective medication should have a fairly dramatic effect. If the
medication had only a slight effect then the benefit is not great
enough to be worth the risk of taking it. Parents, teachers and
the person with autism are the only people who can really evaluate
if a medication is effective for controlling anxiety, hyperactivity,
behavior problems, obsessions or aggression." (10)
DMG (dimethylglycine) has been shown to enhance the function of
the immune system of laboratory animals. In fact, the immune systems
of animals given DMG responded to infection 300% to 1,000% better
than did controls. (11) Based on his observations and reports from
parents of autistic children, Bernard Rimland recommends DMG for
autism saying, "I am firmly convinced that DMG is helpful to
a substantial proportion of autistic children and adults."
Rimland's initial interest in DMG began in 1965
when Russian investigators reported improvements in the speech of
12 out of 15 mentally handicapped children who had been unable to
communicate prior to treatment with DMG. In addition to enriched
vocabulary, the children began to use simple sentences, their general
mental state improved, and there was better concentration and interest
in toys and games.
According to Rimland, "If DMG is going to
work, its effects will usually be seen within a week or so, though
it should be tried for a few weeks or a month before giving up."
In some cases dramatic results have been seen within 24 hours: A
Los Angeles mother was driving on the freeway, three-year-old Kathy
in the back seat, five-year-old mute autistic son Sammy in the front.
DMG had been started the day before. Kathy began to cry. Sammy turned
and spoke his first words: "Don't cry, Kathy." The mother,
stunned, almost crashed the car.
Vitamin B6 has a remarkable record of providing positive results
in treating autistic children. A German investigator, V. E. Bonisch,
reported in 1968 that 12 of 16 autistic children had shown considerable
behavioral improvement when given high dosage levels (100 mg to
600 mg per day) of vitamin B6. Three of Bonisch's patients spoke
for the first time after the vitamin B6 was administered in this
open clinical trial. (12)
Following publication of his book, Infantile
Autism, Rimland launched a large-scale study of vitamin B6,
niacinamide, pantothenic acid, and vitamin C involving over 200
autistic children. At the end of the four-month trial it was clear
that vitamin B6 was the most important of the four vitamins being
investigated, bringing about remarkable improvements in some cases.
Between 30% and 40% of the children showed significant improvement
when given vitamin B6. (13)
Two years later, Rimland initiated a double-blind
placebo-controlled crossover experiment of vitamin B6 and magnesium
therapy on autistic children. Sixteen autistic children received
B6 in doses ranging from 300 mg to 500 mg per day along with several
hundred mg/day of magnesium and a multiple-B tablet. In both studies
the children showed a remarkably wide range of benefits from the
vitamin B6, including better eye contact, less self-stimulatory
behavior, more interest in the world around them, fewer tantrums,
and improved speech. (13)
One of the most common and troubling times for parents of autistic
children is when the children cannot fall asleep effectively. Melatonin
has been shown to help many restless autistic children (and their
exhausted parents) establish more natural sleep patterns. According
to Jaak Panksepp, Ph.D. of Bowling Green State University, up to
50% of autistic children exhibit disturbed sleep patterns, suggesting
some form of deficit in the brain system that promotes normal sleep.
"It is likely that for presently unknown reasons, the brains
of some autistic children are deficient in this important chemistry.
If so, early supplementation with this hormone may be essential
for normalizing development."(14)
Panksepp recommends melatonin 0.7 to 1.0 mg be
given only once a day, about half an hour before the regular sleep-time.
The Great Plains Laboratory for Health, Metabolism, and Nutrition
in Overland Park Kansas, specializes in the testing of abnormal
organic acids and microbial metabolites in urine to determine the
presence and effects of yeast and bacteria in children with autism
and other disorders. In addition to treating patients with the antifungal
drug Nystatin, Dr. William Shaw, director of the laboratory routinely
prescribes Lactobacillus GG (LGG), a proprietary probiotic sold
under the trade name Culturelle™, to normalize gut flora and
minimize the growth of bacteria that produce dihydroxyphenylpropioic
acid-like compound (DHPPA-like compound), a tyrosine derivative.
According to Shaw, patients with high DHPPA-like compound values
almost always have severe neurological, psychiatric or gastrointestinal
disorders, such as autism, depression, psychotic behavior or schizophrenia.
Several patients with high DHPPA-like compound values have also
been found to test positive for Clostridium difficile, leading Shaw
to the conclusion that Clostridia species were responsible for production
of this compound. Common results of Dr. Shaw's treatment include
dramatic increases in sociability and mood, remission of facial
tics, and improved learning.
The incidence of autism is increasing and researchers are scrambling
to discover the numerous and varied elements of this disabling condition.
At present there is no cure and clearly more research is needed
to help those stricken with this disability. However, research does
indicate that select nutritional supplementation can have some desirable,
positive effects.
References
1. Christopher Gillberg, Centers for Disease
Control and Prevention Conference. Autism: Emerging Issues in Prevalence
and Etiology. 1997.
2. Wolaich, ML, Felice, M, Drostart, D. The Classification of Child
and Adolescent Mental Diagnoses in Primary Care. Elk Grove Village,
Ill: American Academy of Pediatrics, 1996: 3 16-317.
3. Smalley SL, Genetic influences in autism. Psychiatr Clin North
Am 1991 Mar 14:1 125-39.
4. Piven J, Palmer P, Psychiatric disorder and the broad autism
phenotype: evidence from a family study of multiple-incidence autism
families. Am J Psychiatry 1999 Apr 156:4 557-63.
5. Eric Courchesne, Brainstem, Cerebellar and limbic neuroanatomical
abnormalities in autism. Current Opinion in Neurobiology 1997, 7:269-278.
6. Bernard Rimland, excerpt from the testimony presented before
the House Committee on Government Reform on April 6, 2000.
7. Sandler AD, Sutton KA, DeWeese J, et al., Lack of benefit of
a single dose of synthetic human secretin in the treatment of autism
and pervasive developmental disorder. N Engl J Med 1999 Dec 9 341:24
1801-6
8. Mary N. Megson, M.D., F.A.A.P., Is Autism a G-Alpha Protein Defect
Reversible with Natural Vitamin?, presented at the Defeat Autism
Now Conference, 1999. Pediatric and Adolescent Ability Center, Richmond,
Virginia.
9. Stephen M. Edelson, Ph.D., Naltrexone and Autism, Autism Research
Review International,1995.
10. Temple Grandin, Ph.D., A Perspective on Medication From a Person
with Autism, Autism Society of America, Bethesda, MD.
11. Reap EA, Lawson JW. Stimulation of the immune response by dimethylglycine,
a nontoxic metabolite. J Lab Clin Med 1990 Apr 115:4 481-6)
12. Bonisch E, Experiences with pyrithioxin in brain-damaged children
with autistic syndrome. Prax Kinderpsychol Kinderpsychiatr 1968
Nov-Dec 17:8 308-10.
13. Bernhard Rimland, Ph.D., Vitamin B6 (and magnesium) in the treatment
of autism. Autism Research Review International, Vol. 1 (4), 1987.
14. Panksepp, J., Lensing, P., Leboyer, M., & Bouvard, M.P.
(1991) Naltrexone and other potential new pharmacological treatments
of autism. Brain Dysfunction, 4, 281-300. |
