LOST CAUSES NO MORE,
A breakthrough for autistic children
This article is from Alternative Medicine Magazine and was written by Melanie Haiken. It contains a wealth of information.
On a typical morning, five-year-old Luis Hernandez starts the day with pancakes made from hazelnut flour. But his unusual breakfast doesn't stop there. Before serving Luis his pancakes, his mother, Mary, sprinkles them with gamma linolenic acid oil. Then she pours her son some juice--actually a teaspoon of honey mixed w ith water because he can't tolerate fruit juice--and stirs in more nutrients, including super-concentrated vitamins A and B.
Along with his fortified honey water, Luis takes supplements, including digestive enzymes, fish oil, oil of oregano, grapefruit seed extract, and an array of vitamins, minerals, and amino acids. Downing them all--a process that's played out at dinnertime, too--usually takes about 30 minutes. And once this routine is complete, Mary also rubs two creams containing glutathione and magnesium sulfate into her son's skin before he heads out the door to school.
The Hernandezes' daily routine is part of an alternative therapy program developed by specialists to treat children like Luis who suffer from autism spectrum disorders (ASD), which include Luis's problem, pervasive development disorder (PDD). Since he was diagnosed a year and a half ago, Mary has made it her mission to find out everything that's going on in cutting-edge autism treatment, a world of practitioners and therapies unsanctioned by any mainstream medical group and yet reporting remarkable progress in both identifying potential causes of autism and devising treatments. For what they put her and her son through every day, Mary feels nothing but gratitude. "I can't believe the difference a year has made," she says.
Before Luis started his new diet, he spoke very few words and didn't even know how to point. "When he was hungry, he'd just grab me and push me toward the refrigerator,"
Mary says. Luis had also developed compulsive routines that tied the family's schedule in knots, such as refusing to get into the car until he had spent ten minutes riding around it on his toy ride-along car. He suffered from extreme night terrors; trivial events often triggered uncontrollable rages. He had terrible stomachaches and diarrhea. Perhaps worst of all, though, says Mary, was his detachment from those around him. "He'd sit and stare into space and seem completely uninvolved in anything," she says. "It was heartbreaking to try to get through to him."
A perfect example of the contrast between then and now was the way Luis celebrated his last two birthdays. When he turned four, he sat alone in a corner, refusing to acknowledge his playmates while his three-year-old sister Ana opened all his gifts for him. "It was questionable whether he even knew what was going on," says Mary. This year, he came to his party. "Luis was happy and excited to see everyone, and he had to open each present himself and play with it," says his mother. "It was so wonderful to see him act like any other five-year-old."
Mary is not the only one noticing her son's progress. His teachers say they're happy to participate in his program--even though it means giving him supplements with his lunch and rubbing his skin with creams at recess--because they can see the results. And Luis's progress is quantifiable. The first time he was evaluated using the Autism Treatment Evaluation Checklist, a score developed by the Autism Research Institute to measure autistic behavior and track response to treatment, he rated 127, or "severe." On his most recent test he scored a 30, placing him at the mildest end of the spectrum.
That's extraordinary growth for a child who received no treatment before age four; most autism experts believe a child has the best chance of doing well if behavioral therapy starts by age three. "His autistic symptoms are very mild at this point," says Mary. While he still shows a significant language delay, Luis has made so much progress that, with the help of an aide, he will attend a mainstream kindergarten in September.
Dietary salvation
The idea that parents like Mary have reason to hope for something akin to a cure is so radical that most autism experts won't even entertain the possibility. Autism, a complex developmental condition also known as a spectrum disorder (because it takes so many different forms), severely impairs a child's ability to learn, communicate, and participate comfortably in day-to-day life.
Children with these disorders, which include Asperger's syndrome as well as PDD, often have severe speech delays or no speech abilities at all, poor social skills, trouble sleeping and eating, and a tendency to get caught up in repetitive motions such as rocking and head banging. Until recently, there was no reason to think people with autism could ever lead anything close to a normal life.
Yet today stories of such miraculous awakenings as Luis's abound. "I've seen kids who just sat curled up in a ball, humming to themselves, and then a month after beginning biomedical treatment, they walk into my office smiling and saying hello," says Kenneth Bock, director of the Rhinebeck Health Center in Rhinebeck, New York, who estimates he has treated 600 to 800 autism patients over the past ten years.
The therapies that have worked such
wonders for kids like Luis have been pioneered by a group of doctors and practitioners linked by their membership in a nine-year-old group called Defeat Autism Now! (DAN!). The DAN protocol, as it is known, has mushroomed into a long list of potential treatments, most of which are studied by DAN-affiliated doctors and publicized through biannual DAN conferences. Mary Hernandez was introduced to these treatments by Peta Cohen, a New Jersey nutritionist and DAN practitioner, who has been treating children with autism spectrum disorders for six years.
The cornerstone of the DAN treatment, also known as the biomedical approach, is addressing the digestive disorders and metabolic problems that practitioners believe literally starve the brains of kids with autistic spectrum disorders, as well as the heavy metal toxicity that DAN members think underlies these conditions. Treatment is highly individualized since autism manifests itself differently in each child, but a typical regimen would likely include a specialized diet such as the gluten-free, casein-free (GFCF) diet, a broad variety of supplements to compensate for poor absorption and digestion of nutrients, chelation to remove heavy metals, and treatment for dysbiosis, or an overgrowth of harmful bacteria, yeast, or parasites in the gut.
No one knows how many kids are being treated by some version of this approach. But Bernard Rimland, the researcher who started the Autism Research Institute, the parent organization of DAN, estimates that DAN practitioners, who number about 350, are reaching several thousand children. And while there are no hard data on the numbers who have benefited, Bock says the vast majority of the children he treats respond to at least some portion of the biomedical plan.
"It's an incredibly exciting time because each research breakthrough suggests new treatment directions," says Bock. "We're actually able to turn some of these kids around, and it's just the most amazing thing to see. We're so far ahead of where we were even two years ago."
The mercury question
Even more astonishing, perhaps, is how few parents of autistic children ever hear of these new developments. The American Academy of Pediatrics (AAP) does not account for any biomedical treatment approaches in its position paper on autism, and most pediatricians and pediatric neurologists--the doctors an autistic child is most likely to see--don't recommend anything beyond behavioral therapy. There are signs of change, however: A growing number of doctors acknowledge that autistic spectrum kids have gastrointestinal problems, for instance. Many even suggest that parents try a GFCF diet for these children.
"Ten years ago, the mainstream take on autism was that it was 100 percent genetic," says Lynne Mielke, a psychiatrist who opened her autism treatment practice in Pleasanton, California, one year ago after her own autistic son was helped immensely by the DAN protocol. "Now the medical establishment is openly acknowledging that some unknown environmental factors may also be involved."
What continues to divide alternative and mainstream doctors is the role that mercury does--or doesn't--play in autism. Members of DAN see more than coincidence at work in the timing of the recent rise in autism cases--from 4 to 5 per 10,000 children in the early 1980s to 34 per 10,000 in 1996, according to one study conducted by the Centers for Disease Control and Prevention in Atlanta. Researchers note that at least some of this increase is due to a broader definition of autism.
But DAN members, among many others, counter that during that same period, the government upped the number of recommended routine vaccinations, many of which contained a mercury-based preservative called thimerosal. Before the FDA directed vaccine manufacturers to remove it from most vaccines in 1999 (flu shots still contain it), the levels of mercury in a typical six-month-old who had received all the vaccines was 187 micrograms, more than double what it had been ten years earlier.
And vaccines may be just part of the problem, some experts say; mercury can reach fetuses and breast-fed infants through their mother's dental fillings or contaminated fish she may have eaten during pregnancy, among other sources.
The main reason mercury could be such a risk factor for autism, say DAN members, is that certain kids are predisposed to a metabolic malfunction that makes it hard for them to excrete it and other heavy metals. "Some kids appear to be born with a genetic defect that makes their bodies less efficient at getting rid of toxins like thimerosal," says Bock.
In such cases, a buildup of heavy metals in their bodies would compromise their immune systems and cause brain damage. The situation for these children grows even worse, says Bock, when they are inoculated with the measles, mumps, and rubella (MMR) vaccine at 12 to 15 months, and again at four to six years.
This vaccine doesn't contain thimerosal, but a child whose immune system has already been compromised by mercury exposure can overrreact to the live measles virus in it, which can inflame the gut and lead to the gastrointestinal problems that are a hallmark of autism, some alternative practitioners say. These stomach problems make it even harder for already sick kids to efficiently absorb nutrients, thus worsening brain damage by essentially depriving the brain of nutrients. "Heavy metals poison the body in every imaginable way," says Mielke, "and what you end up with are three layers of problems: brain damage, gut inflammation, and immune deficiency."
Mainstream medicine doesn't buy it. In May, the well-respected Institute of Medicine released a report concluding that, after an extensive review of multiple studies, it found no statistical link between thimerosal and autism. Autism is mostly the result of bad luck and genetics, say mainstream experts, though some unknown environmental factors may be partly to blame, including complications during pregnancy.
The reaction from the alternative community was what you might expect: outrage. DAN practitioners and organizations like the National Autism Association and SafeMinds criticized the report for reviewing what they say were flawed studies and for being driven by political concerns to protect the national vaccination program. "For some reason the institute considered a number of studies that had methodological flaws or betrayed conflicts of interest," says Bock, "and chose to ignore the powerful information that was presented."
In the meantime, autism practitioners continue to press forward with their innovative experiment, which is being conducted largely on the basis of shared information and individual success stories. In fact, little of what they do has been corroborated by large formal studies--most of it is just too new. Though many studies are now under way, several small studies have already suggested that a significant number of autistic children do respond to certain kinds of nutritional therapy.
In one of the most recent studies, at least one theory--that heavy metals profoundly interfere with cellular function in autism patients--received some validation.
Writing in the journal Molecular Psychiatry, Richard Deth, a molecular pharmacologist from Northeastern University in Boston, found good evidence to suggest that thimerosal and alcohol inhibited the activity of an enzyme that is key to the way cells communicate with each other. This enzyme, in fact, tends to be low in autism patients. In follow-up studies, which have not yet been published, he concludes that the reason for the lower enzyme activity was that these substances limit the formation of a B vitamin called methyl B-12.
"This is a critical enzyme for normal mental function," he says, "and it appears that a deficiency of methyl B-12 could be interfering with its function in these kids." He's now working with DAN-oriented doctors like Kenneth Bock to see if injections of methyl B-12 can jump-start the metabolic pathways that appear to be blocked in those with autism. "This is the hottest thing in autism treatment we've seen for some time," Deth says.
No cure, but better
By the time Danny Dubrow- sky's mother, Rosemarie, began experimenting with alternative approaches, Danny was four years old, and she didn't believe she had any choice. "I had completely given up on doctors," Rosemarie says, explaining that she was forced to resort to doing her own research after Danny's doctors failed to offer any treatment options. "I walked out of two gastroenterologists' offices," she says.
"There he was at three years old, with an ulcer and reflux so bad that his back teeth were falling out, and they couldn't help me."
Diagnosed with autism at 27 months, Danny suffered from constant digestive problems. Rosemarie put him on the GFCF diet, which reduced his symptoms by about 60 percent. "But he still had his ups and downs," she said. Next she tried secretin therapy, a controversial approach that seems to work for a small percentage of ASD kids by replacing a neurohormone that certain children appear to be deficient in. That was the first big breakthrough for Danny. "Within three days, all his physical problems were way better," Rosemarie says.
Danny then underwent a homeopathic detoxification regimen--gentler than the one prescribed by DAN--to remove contaminants and bacteria from his body. Each step resulted in some improvement. Barely verbal, Danny began uttering phrases for the first time. "He began to be more interactive, to ask for things and say what he wanted," says Rosemarie.
A bigger turning point for Danny came when he tried a series of homeopathic growth factors developed by former NIH scientist Barbara Brewitt. Marketed by Brewitt under the name Cell Signal Enhancers, the growth factors, one of which is called IGF-1, are designed to improve the body's ability to utilize nutrients. Among the more controversial of the cutting-edge autism treatments, the homeopathic growth factors are difficult for even the experts who use them to explain. Basically, they help the body recognize mercury and other chemicals, and get rid of them.
Gregory Saunders, a naturopath in Adrian, Michigan, whose practice has a six-month waiting list, thinks this therapy can make a difference. "I had one child who was completely nonverbal, and six months later he was not only talking, he was reciting the alphabet," he says. The growth factors helped Danny with language, too,
Rosemarie says. "He went from where none of his words were recognizable to where he would say 'cracker,' 'water,' 'chip'--and suddenly we could understand him."
For Danny, though, the most rewarding changes have come recently through the biomedical interventions of Kenneth Bock. Bock prescribed many aspects of the DAN regimen, including chelation therapy, digestive enzymes, and supplements.
The boy's sleeping improved almost immediately. "Danny never slept more than three hours at a stretch," says his mother. He now sleeps nine hours a night. Even more significant, says his mother, is that the treatments have helped Danny begin to emerge from his shell. "These latest treatments have made an amazing difference in his personality," she says. "He's much more energetic and aware." Unfortunately, nothing has proved to be a miracle cure for Danny, who still struggles with basic communication skills and requires extensive behavioral therapy.
"My child is not a poster child for anything," says Rosemarie. But he's no longer the child who was so aggressive and self-destructive that he had to be stopped from biting himself. "Now, when you walk in the door, he calls out "hi!' and runs to find you," she adds.
For the first time ever, Danny would rather spend time with his parents than alone, and his mother is elated. "When you've gone from no words, no interaction, and huge medical issues, to pointing, clapping, speaking, and running across the room to give you a hug, then everything's a miracle," she says.
Doing Your Homework: 7 Treatment Strategies
The good news for parents of children with autistic spectrum disorders is that there's no need to reinvent the wheel; whatever your question, many concerned parents and dedicated clinicians have been there before you.
Tap into the latest thinking.
Research Your first stop is the Autism Research Institute, autism.com, where you can order a copy of the DAN protocol. You can also call 619.281.7165, or send $30 (California residents add $1.75 tax) to Autism Research Institute, 4182 Adams Avenue, San Diego, CA 92116.
Also visit physician Jeff Bradstreet's International Child Development Resource Center at gnd.org.
Read. Several books describe unconventional approaches to treating autism with an emphasis on nutrition.
Three of the most popular include Karyn Seroussi's now-classic book, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery
Children with Starving Brains: A Medical Treatment Guide For Autism Spectrum Disorder, by Jaquelyn McCandless, M.D.;
Facing Autism: Giving Parents Reasons for Hope and Guidance for Help, by Lynn Hamilton.
Find a DAN Practitioner.
The biomedical approach to treating autism is far too complicated to tackle on your own. To find a doctor or practitioner qualified to supervise treatment, use DAN's state-by-state listing, available at cgiworker.com/danlist/danlist.
Once you've found a practitioner, he or she can test your child and then help you find the most appropriate options.
Treatment strategies.
Test Before Treating. A series of blood, urine, stool, and sometimes hair tests will reveal a great deal about the toxins your child has been exposed to, the condition of his or her digestive system, and the nutritional deficiencies and metabolic imbalances your child most likely suffers from.
Deal with Diet. Kids with autistic spectrum disorders appear to benefit significantly from specialized diets.
For guidance on the popular glutein-free casein-free (GFCF) diet, or specific carbohydrate diet, visit gfcfdiet.com, or the Autism Network for Dietary Intervention (autismndi.com), or breakingtheviciouscycle, a website built around the work of nutritionist Elaine Gottschall.
Supplement with Vitamins and Minerals. To treat the metabolic issues that accompany, and perhaps underlie, autism, you'll need a host of vitamins and minerals, including magnesium, zinc, B vitamins, omega-3 fatty acids, and vitamin A. Showing particular promise is a so-called quintet of metabolic enhancers, including tri-methyl-glycine, folinic acid, glutathione, allithiamine, and methyl B-12.
Experiment with Enzymes. In addition to specialized elimination diets, many parents trying the DAN protocol report benefits from digestive enzymes, including those made by Houston Neutraceuticals (houstonni.com) and EnZymAid by Kirman. A useful resource is Enzymes for Autism and Other Neurological Conditions by Karen DeFelice; she also has a website at enzymestuff.com.
NOTE: Garden of Life offers a wonderful digestive enzyme which is in a powder form, making it easy to incorporate into your childs diet. To learn more go to http://community.webtv.net/essentialhealth/WHOLEFOODPRODUCTS
Detoxify.
DAN practitioners favor chelation therapy as a way to rid the body of contaminants; some parents prefer the gentler route offered by homeopathy. Amy Lansky describes the dramatic improvement her son Max underwent, for instance, after undergoing homeopathic treatment in Impossible Cure: The Promise of Homeopathy.
NOTE:You may wish to check into Maxam Labs alternative to chelation, called clathration. http://www.maxamlabs.com
Check with essentialhealth@webtv.net for the best prices on these expensive products. They are much less expensive then chelation therapy, as well as being, non-invasive and less challenging to the body.
Consider Growth Factors. These substances, such as IGF-1 developed by Barbara Brewitt, are showing promise in treating some children with autistic spectrum disorders. For more information, visit Biomedcomm.com.
Keep up. New treatments and products are being developed all the time; stay abreast of the latest research by visiting the DAN website (autism.com) and attending autism conferences.
HOMEPAGE
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