The Institutes have encountered years of skepticism from mainstream medicine. Action News followed one child and her family through their visit. 5-year-old Nikola Rotberga has Miller-Dieker syndrome, a genetic defect that left her brain malformed and prone to seizures. She can't walk or talk, play with toys or feed herself.
We first met Nikola when her family traveled to our area this summer from the country of Latvia. Her mother Inguna says doctors there say her daughter's condition can't be remedied. But Inguna says, "I just try to find a way to help Nicole." She found The Institutes for the Achievement of Human Potential on the Internet.
It was founded as a non-profit organization in the 1950's by physical therapist Glenn Doman; his daughter Janet has been the director since 1980. Janet Doman, Director: "Parents come here from all over the world we teach mother and father how the brain grows, why it grows the way it does, and we evaluate and diagnose the children and design a program."However, the Institutes will not evaluate the child until both parents have been through a 5-day training course, because parents must carry out the program at home. Those courses cost at least $1600 dollars a couple. The child's initial evaluation is another $3,000. To pay for all this, the Rotberga family made public pleas on a Latvian charity website.
The Institutes claim that brain-injured kids can become well through lots of therapy and movement, weaning them off as many medications as possible, including anti-seizure drugs, and a strict diet of all-natural, non-processed foods. Neurologist Denise Malkowitz, an Institute consultant, says this all helps heal the brain. "I am a firm believer in neuro-plasticity, the ability of the brain to re-wire."The Institutes point to 7-year-old Edward Smith, from Houston, Texas, as one of their successes. He suffers from a type of blindness related to his brain injury. Edward's parents say the Institutes program has helped him start to see, and even read. Edward's mother Kathryn says, "So we're going to keep going and get his vision even better."
One of the methods the Smiths and other parents are taught at the Institutes is patterning. Several times a day, adults move the child's head and limbs to simulate creeping, crawling, and other early developmental milestones. However, the American Academy of Pediatrics says patterning doesn't work, and has stuck by that stance for the last 40 years. The Academy says patterning is based on an "outmoded and over-simplified" theory of brain development.
That angers Doman. She says mainstream medical groups won't visit the Institutes to see exactly what they do. Janet Doman: "The criticisms come from people usually sitting in an Ivory Tower who don't ever really get down in the trenches to treat a child. "
Developmental pediatrician Ted Kastner acknowledges he's never visited the Institutes, but says he personally works with hundreds of disabled kids in New Jersey. He also helped write an updated version of the Pediatrics report in 1999 criticizing patterning. It was re-affirmed again last year.
Dr. Ted Kastner, President of the Development Disabilities Health Alliance: "These have been demonstrated to be of no value in children, in terms of them developing motor skills or cognitive skills."
Nikola's mother says she followed the Institutes' program herself for several months. She initially says she saw progress. Mom says Nikola started creeping, reaching for toys, and smiling at her parents. But then, she says, Nikola regressed, and the family brought her to the Institutes this summer, searching for answers.
Janet Doman: "Can we help this child? We don't know. Are we willing to keep trying? If mom and dad want our help, we'll keep trying."
Recent tests uncovered mercury in Nikola's system. And the staff at the Institutes says lowering those levels could lessen her seizures and help her progress. She's coming for another visit next month. But local doctors are skeptical, and say the best treatment for a child with this condition is anti-seizure medicine.