Thursday, February 19, 2009

Michigan autism conference explores alternative treatments

From The Detroit News:

COMMERCE TOWNSHIP, Mich. -- Heidi Scheer can take one look at her 8-year-old son, Gannon, (pictured) and know what's happening inside his little body and brain.

A veteran mother of an autistic child, Scheer has spent the past three years transforming Gannon's diet to ward off foods, toxins and chemicals that can throw his brain, digestive tract and body into chaos.

Gluten, a mixture of proteins found in wheat that is difficult for some to digest, was the first to go. By the end of three weeks, Gannon transformed from a child who mumbled but rarely spoke to one who spoke in sentences. Among his first to his mother: "I love you."

"I will never forget it. I had said it so many times before to him and I never got a reaction. I got a grunt. It was like he actually heard me for the first time. I just froze. I thought OK -- we are on the right track," Scheer said.

And like many parents of autistic children, Scheer became a believer in biomedical treatments for the disease, which affects one in 150 children in America.

Biomedical treatments -- such as diet changes, vitamin supplements, chelation and hyperbaric oxygen chambers -- are the focus of the first International Conference on Autism Spectrum Disorders being held Friday through Sunday in Novi. About 200 people from across the Midwest are registered to attend the conference, which includes specialists from around the world.

Dr. Phillip DeMio, a Cleveland emergency room physician with an autistic son,
organized the conference. He also created the American Medical Autism Board to
provide opportunities for health care pros to become certified in biomedical treatments.

The American Academy of Pediatrics' standard treatment for autism calls for a mix of developmental approaches, such as speech, language, physical and occupational therapies, and behavioral interventions.

The biomedical concept is based on the theory that autism is not primarily a psychiatric or behavioral disorder, DeMio said. Rather it's a medical disease with a biological basis to its cause and to ongoing problems, such as pain, gastrointestinal problems and immune dysfunction.

"The brain is supported by the entire body and you need to nourish yourself properly. Many kids do a have a hard time dealing with toxins and they have digestive problems. It can affect the brain and the heart of detoxification system," DeMio said.

More invasive, expensive and controversial approaches include chelation -- removing heavy metals and toxins via creams or intravenously -- and hyperbaric oxygen therapy, in which a child lays inside a chamber.

Both therapies often require out-of-state travel and cost hundreds of dollars. The use of chelation therapy to treat autism has been linked to one death -- a 2005 incident in which a 5-year-old boy was treated with an agent not widely used in children.

Dr. Tisa Johnson, a developmental pediatrician at Henry Ford's Center for Autism and Development Disability evaluation clinic, estimated that half of the autistic children she encounters have had biomedical treatments at the urging of their parents.

"There is no cure. Parents are desperate and they want treatment. It's not my practice to discourage them. I try to partner with them and ask them their goal," Johnson said.

"Most research so far hasn't revealed any significant improvements. It's all been anecdotal through parents. There hasn't been a double blind study. There needs to be more. Otherwise it leads parents to guess," she said.

A psychologist diagnosed Jennifer Manning's 5-year-old son, Bruce, with autism. Manning got advice from her pediatrician but started doing her own research on the Internet. There she found Generation Rescue, an organization dedicated to autism treatment, and from there she located a doctor in Metro Detroit she could talk to about biomedical treatments.

Manning, who lives in Chesterfield Township with husband, Bruce, has tried the diet on her son with some success. The Mannings are taking the biomedical approach one step further: They have rented a hyperbaric oxygen chamber for their home for $2,500. Bruce started treatments three weeks ago.

"Since the beginning, they've told me early intervention is the best and my son is 5 already. If I sit and wait for studies and insurance companies to catch up, my son will be past the point of getting help. I am doing everything I know is safe," she said.