NJ Family Takes Alternative Steps To Help Autistic Girls Parents believe vaccines at fault By Colleen O'Dea For The Daily Record http://tinyurl.com/ycd5xh For years, Jonathan Rose and Gayle DeLong did the best they could for their daughters, both of whom are autistic, going beyond simple special education programs and trying commonly accepted methods to improve their behavior. Then, in April 2005, David Kirby's book, "Evidence of Harm," which explores a possible link between mercury in vaccines and the explosion in cases of autism, made them think they could do more. Now, almost 18 months after starting their daughters on a strict regimen of alternative therapies that includes near round-the-clock vitamins and supplements, a gluten-free diet and hyperbaric oxygen treatments, they finally feel they are really helping Jenny, 10, and Flora, 6. "Both our daughters have shown clear improvement, "Jonathan Rose said. "Jenny enters conversations more easily, and Flora has more eye contact," DeLong said. "Concerning school, Jenny continues to do well. Her grades are going from mainly Bs to As and a few Bs ... (Flora) has trouble focusing, but does well once she is focused." Possibly treatable The big news, Rose said: "Autism may be treatable, even curable." This view, like questions about whether childhood immunizations have caused the meteoric rise in autistic children, is hotly debated. The U.S. Centers for Disease Control and Prevention's position is that there is no cure for the numerous disorders that fall under the umbrella of autism. The agency pushes traditional educational and behavioral treatments, as well as the use of some medicines to relieve symptoms. Not everyone even agrees that there has been a real increase in cases of autism over the last two decades, despite the data. The number of students in the United States considered autistic has risen from about 5,200 in 1991 to more than 192,000 last year, federal education statistics show. That's an increase of close to 4,000 percent. Where the autistic represented one-tenth of 1 percent of all special education students in 1991, they comprised more than 3 percent of the total in 2005. In New Jersey, nearly 7,400 children in special education classes -- or five of every 1,000 students -- were considered autistic last year, according to the state Department of Education. That's an increase of 60 percent in three years. Today, the CDC estimates that as many as 1 in 166 children across the country has autism. Some researchers say the rise is due to an increase in classification of children as autistic -- the definition was only fully recognized by all states in 1994 -- but others say the data don't support that because there haven't been declines in any other special education categories. Many parents and several organizations believe an increase in childhood vaccinations caused the increase. Rose and DeLong, both college professors, said their daughters each were diagnosed with autism around age 3½. They used the typically prescribed treatment: behavior analysis and modification techniques with both. These helped Jenny, but not Flora. Vaccine theory Then the couple read "Evidence of Harm." In his book, Kirby says it's impossible to say whether the thimerosal, which is about half mercury, used as a preservative in vaccines, causes autism in some children, but he lays out a convincing case that it might. The book notes that two series of shots were added to the vaccination schedule in the 1990s, around the same time the dramatic increases in autism began. Appearing on "Meet the Press" in August 2005, Kirby said the amount of mercury injected into children during that time far exceeded federal safety limits. For instance, at age 2 months, children got three shots totaling 62.5 micrograms of mercury, which was about 125 times higher than the level considered safe by the U.S. Environmental Protection Agency. "Mercury is toxic," Kirby said. "It's a known neurotoxin. If it gets into the brain, it could stay there virtually forever ...We really need to look at what this mercury is doing inside the bodies and brains of these children if we're going to solve this mystery one way or another." There's no question for Rose and DeLong. "We believe the mercury in vaccines caused our daughters'autism," Rose said. "The symptoms of mercury poisoning and autism are the same." So with a cause, they searched for a cure. Last summer, they found Dr. Stuart Freedenfeld, who practices in Stockton, Hunterdon County. He is one of a number of doctors working with the California-based Autism Research Institute on autism causes and treatments. Freedenfeld began treating autistic patients -- he's seen about 400 -- nine years ago. "Mercury, aluminum, nickel, we find high levels of toxic metals in a good number of children," Freedenfeld said. "What we do with these children some might look at and say it's alternative medicine. It's not. It's very well-documented medicine." He believes, as do many other doctors and researchers, that it's a combination of toxins in a child's system and a genetic inability on the part of only some to handle them that leads to autism. That explains why so many children who have been vaccinated or exposed to other toxins don't develop problems. The treatment centers around chelation, which involves administering substances to help rid the body of mercury and other toxins. Freedenfeld performs tests to determine the levels of toxins in a child's system and then tailors a plan of supplements, including magnesium, zinc, some B vitamins and essential oils, to the child's needs. He also strongly recommends a diet free of gluten and casein -wheat and dairy -- because almost 90 percent of autistic children have trouble digesting those and they can act as morphine-like drugs in a child's system. He may recommend other therapies, such as hyperbaric oxygen treatment, as well. One cabinet in the Rose kitchen, plus a shelf in the refrigerator, are devoted to all the supplements for the girls and DeLong, who had herself tested and also had high levels of mercury in her system. There are creams, injections and intravenous pushes, in addition to pills. The girls receive their first supplement at 6:30 a.m. and their last at 11 p.m. '30 supplements a day' "There are about 30 supplements a day and we have to do them at certain times," said DeLong, adding the girls are good about sitting for injections. The couple recently bought a home hyperbaric oxygen chamber, inside which a person breathes pure oxygen, for DeLong and the girls, having had success from a series of treatments through Freedenfeld's office. The couple tracks their daughters' progress with thick pink and blue binders that hold medical results, which show a reduction in mercury and other toxins in their systems, and, in Jenny's case, higher scores on school standardized tests. More important are the behavioral results they see, which are not as easy to quantify, but just as real, they said. It's hard to tell there's anything amiss with Jenny. She plays with her younger sister, smiles for a camera and willingly tells a visitor she doesn't mind all the medicines she takes. "I like it when it's chocolate," she said of one protein powder. "The place where I see the most improvement is socially,"said Susan Mizrahi, a teacher at Woodland School, who had Jenny in third grade, before the alternative therapies, and now has her in fifth grade. "She socializes with other students on the playground: She talks to them; she plays games with them. It's definitely a huge improvement. "She always got it academically, but now she raises her hand and asks questions in class, too." Flora's gains are not as apparent. She reads Dr. Seuss books and likes to watch "Little Einsteins." But she is quieter and uncomfortable around visitors. Yet just the fact that she can tolerate two strangers in her home without becoming upset is an improvement. The couple believe Flora's case has been tougher to treat because, in addition to her regular vaccinations, she also was getting a flu shot each year at her wellness checkup, since her birthday falls in the winter. An August baby, Jenny has never gotten a flu shot. While the federal Food and Drug Administration conducted a review that found no evidence of harm from the use of thimerosal in vaccines, it got drugmakers to virtually eliminate its use. Flu vaccines are among the only ones that still contain any substantial amounts of thimerosal today. Hope of recovery The California-based Autism Research Institute says children can recover from autism. "We have found that an extremely individualized approach to each child leads to the best outcomes," said Matt Kabler, an ARI spokesman. "Children have recovered in as little as two years and others are in the process of recovering for many more years." But Dr. Harvey Fineberg, president of the U.S. Institute of Medicine, cautioned that there is no clinical proof that chelation is effective in relieving the behaviors of autism. "When you have a single story and a repeated story of an experience that a parent has with a treatment like chelation, you have to keep in mind that the history of medicine is strewn with discarded treatments that people at one time believed in very, very strongly," said Fineberg, who appeared on "Meet the Press"with Kirby. "When you have one case after another, it's one anecdote after another, and the plural of anecdote in scientific terms is not evidence." "Most children see improvement from the very first visit,"Freedenfeld said. "I'm not going to stop until their children are fully recovered, that's my promise to parents." He estimated that about 20 percent of his patients see a full recovery and as many as 60 percent see marked improvement. "From data collected from thousands of parents, chelation, special diets and supplementation (vitamin and mineral) are the most effective biomedical therapies," said Matt Kabler, a spokesman for the ARI. "Unfortunately, the mainstream medical community does not believe that autism is treatable and therefore most of these alternative interventions that are working are not covered by most insurance companies." In the case of the Rose girls, insurance has covered only a small portion of their costs. "We've gone to some personal expense," said Jonathan Rose, but the couple believes it's worth it. Freedenfeld said insurance won't cover vitamins and different foods, though it will cover his office visits. "But what's worse, they'll pay to put the toxins into the children," he said.