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We Cured Our Son's
Autism
By Karyn Seroussi
Copyright © 2000 Karyn Seroussi
When the doctors said our son would be severely disabled for life, we
set out to prove them wrong.
When the psychologist examining our 18-month-old son told me that she
thought Miles had autism, my heart began to pound. I didn't know exactly
what the word meant, but I knew it was bad. Wasn't autism some type of
mental illness -- perhaps juvenile schizophrenia? Even worse, I vaguely
remembered hearing that this disorder was caused by emotional trauma
during childhood. In an instant, every illusion of safety in my world
seemed to vanish.
Our pediatrician had referred us to the psychologist in August 1995
because Miles didn't seem to understand anything we said. He'd developed
perfectly normally until he was 15 months old, but then he stopped saying
the words he'd learned -- cow, cat, dance -- and started disappearing
into himself. We figured his chronic ear infections were responsible for
his silence, but within three months, he was truly in his own world.
Suddenly, our happy little boy hardly seemed to recognize us or his
3-year-old sister. Miles wouldn't make eye contact or even try to
communicate by pointing or gesturing. His behavior became increasingly
strange: He'd drag his head across the floor, walk on his toes (very
common in autistic children), make odd gurgling sounds, and spend long
periods of time repeating an action, such as opening and closing doors or
filling and emptying a cup of sand in the sandbox. He often screamed
inconsolably, refusing to be held or comforted. And he developed chronic
diarrhea.
As I later learned, autism -- or autistic spectrum disorder, as doctors
now call it -- is not a mental illness. It is a developmental disability
thought to be caused by an anomaly in the brain. The National Institutes
of Health estimates that as many as 1 in 500 children are affected. But
according to several recent studies, the incidence is rapidly rising: In
Florida, for example, the number of autistic children has increased
nearly 600 percent in the last ten years. Nevertheless, even though it is
more common than Down syndrome, autism remains one of the least
understood developmental disorders.
We were told that Miles would almost definitely grow up to be severely
impaired. He would never be able to make friends, have a meaningful
conversation, learn in a regular classroom without special help, or live
independently. We could only hope that with behavioral therapy, we might
be able to teach him some of the social skills he'd never grasp on his
own.
I had always thought that the worst thing that could happen to anyone was
to lose a child. Now it was happening to me but in a perverse,
inexplicable way. Instead of condolences, I got uncomfortable glances,
inappropriately cheerful reassurances, and the sense that some of my
friends didn't want to return my calls.
After Miles' initial diagnosis, I spent hours in the library, searching
for the reason he'd changed so dramatically. Then I came across a book
that mentioned an autistic child whose mother believed that his symptoms
had been caused by a "cerebral allergy" to milk. I'd never
heard of this, but the thought lingered in my mind because Miles drank an
inordinate amount of milk -- at least half a gallon a day.
I also remembered that a few months earlier, my mother had read that many
kids with chronic ear infections are allergic to milk and wheat.
"You should take Miles off those foods and see if his ears clear
up," she said. "Milk, cheese, pasta, and Cheerios are the only
foods he'll eat," I insisted. "If I took them away, he'd
starve."
Then I realized that Miles' ear infections had begun when he was 11
months old, just after we had switched him from soy formula to cow's
milk. He'd been on soy formula because my family was prone to allergies,
and I'd read that soy might be better for him. I had breast-fed until he
was 3 months old, but he didn't tolerate breast milk very well --
possibly because I was drinking lots of milk. There was nothing to lose,
so I decided to eliminate all the dairy products from his diet.
What happened next was nothing short of miraculous. Miles stopped
screaming, he didn't spend as much time repeating actions, and by the end
of the first week, he pulled on my hand when he wanted to go downstairs.
For the first time in months, he let his sister hold his hands to sing
"Ring Around a Rosy."
Two weeks later, a month after we'd seen the psychologist, my husband and
I kept our appointment with a well-known developmental pediatrician to
confirm the diagnosis of autism. Dr. Susan Hyman gave Miles a variety of
tests and asked a lot of questions. We described the changes in his
behavior since he'd stopped eating dairy products. Finally, Dr. Hyman
looked at us sadly. "I'm sorry," the specialist said.
"Your son is autistic. I admit the milk allergy issue is
interesting, but I just don't think it could be responsible for Miles'
autism or his recent improvement."
We were terribly disheartened, but as each day passed, Miles continued to
get better. A week later, when I pulled him up to sit on my lap, we made
eye contact and he smiled. I started to cry -- at last he seemed to know
who I was. He had been oblivious to his sister, but now he watched her
play and even got angry when she took things away from him. Miles slept
more soundly, but his diarrhea persisted. Although he wasn't even 2 yet,
we put him in a special-ed nursery school three mornings a week and
started an intensive one-on-one behavioral and language program that Dr.
Hyman approved of.
I'm a natural skeptic and my husband is a research scientist, so we
decided to test the hypothesis that milk affected Miles' behavior. We
gave him a couple of glasses one morning, and by the end of the day, he
was walking on his toes, dragging his forehead across the floor, making
strange sounds, and exhibiting the other bizarre behaviors we had almost
forgotten. A few weeks later, the behaviors briefly returned, and we
found out that Miles had eaten some cheese at nursery school. We became
completely convinced that dairy products were somehow related to his
autism.
I wanted Dr. Hyman to see how well Miles was doing, so I sent her a video
of him playing with his father and sister. She called right away.
"I'm simply floored," she told me. "Miles has improved
remarkably. Karyn, if I hadn't diagnosed him myself, I wouldn't have
believed that he was the same child."
I had to find out whether other kids had had similar experiences. I
bought a modem for my -- not standard in 1995 -- and discovered an autism
support group on the Internet. A bit embarrassed, I asked, "Could my
child's autism be related to milk?"
The response was overwhelming. Where had I been? Didn't I know about Karl
Reichelt in Norway? Didn't I know about Paul Shattock in England? These
researchers had preliminary evidence to validate what parents had been
reporting for almost 20 years: Dairy products exacerbated the symptoms of
autism.
My husband, who has a Ph.D. in chemistry, got copies of the journal
articles that the parents had mentioned on-line and went through them all
carefully. As he explained it to me, it was theorized that a subtype of
children with autism break down milk protein (casein) into peptides that
affect the brain in the same way that hallucinogenic drugs do. A handful
of scientists, some of whom were parents of kids with autism, had
discovered compounds containing opiates -- a class of substances
including opium and heroin -- in the urine of autistic children. The
researchers theorized that either these children were missing an enzyme
that normally breaks down the peptides into a digestible form, or the
peptides were somehow leaking into the bloodstream before they could be
digested.
In a burst of excitement, I realized how much sense this made. It
explained why Miles developed normally for his first year, when he drank
only soy formula. It would also explain why he had later craved milk:
Opiates are highly addictive. What's more, the odd behavior of autistic
children has often been compared to that of someone hallucinating on LSD.
My husband also told me that the other type of protein being broken down
into a toxic form was gluten -- found in wheat, oats, rye, and barley,
and commonly added to thousands of packaged foods. The theory would have
sounded farfetched to my scientific husband if he hadn't seen the
dramatic changes in Miles himself and remembered how Miles had
self-limited his diet to foods containing wheat and dairy. As far as I
was concerned, there was no question that the gluten in his diet would
have to go. Busy as I was, I would learn to cook gluten-free meals.
People with celiac disease are also gluten-intolerant, and I spent hours
on-line gathering information.
Within 48 hours of being gluten-free, 22-month-old Miles had his first
solid stool, and his balance and coordination noticeably improved. A
month or two later, he started speaking -- "zawaff" for
giraffe, for example, and "ayashoo" for elephant. He still
didn't call me Mommy, but he had a special smile for me when I picked him
up from nursery school. However, Miles' local doctors -- his
pediatrician, neurologist, geneticist, and gastroenterologist -- still
scoffed at the connection between autism and diet. Even though dietary
intervention was a safe, noninvasive approach to treating autism, until
large controlled studies could prove that it worked, most of the medical
community would have nothing to do with it.
So my husband and I decided to become experts ourselves. We began
attending autism conferences and phoning and e-mailing the European
researchers. I also organized a support group for other parents of
autistic children in my community. Although some parents weren't
interested in exploring dietary intervention at first, they often changed
their mind after they met Miles. Not every child with autism responded to
the diet, but eventually there were about 50 local families whose
children were gluten- and casein-free with exciting results. And judging
by the number of people on Internet support lists, there were thousands
of children around the world responding well to this diet.
Fortunately, we found a new local pediatrician who was very supportive,
and Miles was doing so well that I nearly sprang out of bed each morning
to see the changes in him. One day, when Miles was 2 1/2, he held up a
toy dinosaur for me to see. "Wook, Mommy, issa Tywannosauwus
Wex!" Astonished, I held out my trembling hands. "You called me
Mommy!" I said. He smiled and gave me a long hug.
By the time Miles turned 3, all his doctors agreed that his autism had
been completely cured. He tested at eight months above his age level in
social, language, self-help, and motor skills, and he entered a regular
preschool with no special-ed supports. His teacher told me that he was
one of the most delightful, verbal, participatory children in the class.
Today, at almost 6, Miles is among the most popular children in his
first-grade class. He's reading at a fourth-grade level, has good
friends, and recently acted out his part in the class play with flair. He
is deeply attached to his older sister, and they spend hours engaged in
the type of imaginative play that is never seen in kids with autism.
My worst fears were never realized. We are terribly lucky.
But I imagined all the other parents who might not be fortunate enough to
learn about the diet. So in 1997, I started a newsletter and
international support organization called Autism Network for Dietary
Intervention (ANDI), along with another parent, Lisa Lewis, author of
Special Diets for Special Kids (Future Horizons, 1998). We've gotten
hundreds of letters and e-mails from parents worldwide whose kids use the
diet successfully. Although it's best to have professional guidance when
implementing the diet, sadly, most doctors are still skeptical.
As I continue to study the emerging research, it has become increasingly
clear to me that autism is a disorder related to the immune system. Most
autistic children I know have several food allergies in addition to milk
and wheat, and nearly all the parents in our group have or had at least
one immune-related problem: thyroid disease, Crohn's disease, celiac
disease, rheumatoid arthritis, chronic fatigue syndrome, fibromyalgia, or
allergies. Autistic children are probably genetically predisposed to
immune-system abnormalities, but what triggers the actual disease?
Many of the parents swore that their child's autistic behavior began at
15 months, shortly after the child received the MMR (measles, mumps,
rubella) vaccine. When I examined such evidence as photos and videotapes
to see exactly when Miles started to lose his language and social skills,
I had to admit that it had coincided with his MMR -- after which he had
gone to the emergency room with a temperature of 106°F and febrile
seizures. Recently, a small study was published by British researcher
Andrew Wakefield, M.D., linking the measles portion of the vaccine to
damage in the small intestine -- which might help explain the mechanism
by which the hallucinogenic peptides leak into the bloodstream. If the
MMR vaccine is indeed found to play a role in triggering autism, we must
find out whether some children are at higher risk and therefore should
not be vaccinated or should be vaccinated at a later age.
Another new development is giving us hope: Researchers at Johnson and
Johnson's Ortho Clinical Diagnostics division -- my husband among them --
are now studying the abnormal presence of peptides in the urine of
autistic children. My hope is that eventually a routine diagnostic test
will be developed to identify children with autism at a young age and
that when some types of autism are recognized as a metabolic disorder,
the gluten and dairy-free diet will move from the realm of alternative
medicine into the mainstream.
The word autism, which once meant so little to me, has changed my life
profoundly. It came to my house like a monstrous, uninvited guest but
eventually brought its own gifts. I've felt twice blessed -- once by the
amazing good fortune of reclaiming my child and again by being able to
help other autistic children who had been written off by their doctors
and mourned by their parents.
Adapted from the book
Unraveling
the Mystery of Autism and Pervasive Developmental Disorder: A Mother's
Story of Research and Recovery by
Karyn Seroussi.
http://curezone.com/books/amazon/book.asp?ID=449
For more info, contact:
The Autism Network for Dietary Intervention (ANDI)
Fax 609-737-8453
http://www.autismndi.com/
Publishes ANDI News, a newsletter
containing recipes, research updates, and articles by parents and
physicians.
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