History of NADS
NADS Involvement with Down Syndrome Research
From the very beginning, NADS has been interested in Down syndrome research. In the 1960s and 1970s, we invited many researchers to speak at our conferences. They reported on medical, cognitive and educational research projects not only from the U.S., but also from Great Britain, Germany, France and many other parts of the world.
Megavitamins and Minerals
From the 1940s the issue of treating children with Down syndrome with mega vitamins was a topic of interest to parents of children with Down syndrome. In the 1940’s a physician in Detroit, Dr. Henry H. Terkel, developed a mixture of vitamins and minerals, which became known as the U-series. By the 1950s Terkel was focusing mostly on Down syndrome. Many parents were anxious to do anything that might help their child, and so they put their children on Dr. Terkel’s program.
In 1981 Dr. Ruth Harrell and colleagues at Old Dominion University in Virginia published a report that made everyone sit up and take notice. This was a small study with only 16 participants. Dr. Harrell reported that some children with Down syndrome who had been given mega doses of vitamins and minerals had increased IQ scores as high as 25 points in one case.
Many NADS parents contacted NADS to ask about the Harrell study, and it was determined that doing a double-blind, well controlled study could be beneficial not only to NADS families, but to families across the country and beyond.
Use of Megadoses of Vitamins with Minerals in Down Syndrome – Chicago Study
George F. Smith, MD,
Donna Spiker, Ph.D.
Carol P. Peterson, PhD,
Dante Cicchetti, PhD
Parvin Justine, Ph.D.
In 1981 NADS worked closely with Dr. George Smith and his team to put this important study together. We recruited children to participate in the study, which was conducted at Illinois Masonic Hospital in Chicago. In addition, NADS provided some funding for this study.
The purpose of the study was to evaluate the effects of mega doses of vitamins and minerals on the cognitive intelligence of children with Down syndrome. There were a total of 56 children and they were separated into 2 groups with 28 children in each group. The average age in each group at the beginning of the study was 11 years. This was an 8-month study, and children were evaluated at baseline, 4 months and 8 months with psychological tests, physical exams and blood tests. The results showed that both groups of children made improvement over the 8-month period, but no difference were found between those children taking the megavitamins and those taking placebos.
A complete report on this study was published in The Journal of Pediatrics, Vol. 105. 2,pp. 228-234, August 1984.
Congenital Heart Research
Nancy Roizen, MD
Deborah Bryk-Serva, MD
In the late 1980s NADS was concerned about many of our children not having appropriate heart screening at birth. At that time, Dr. Nancy Roizen, Director of the Pediatric Down Syndrome Clinic at the University of Chicago, shared our concern, and in 1989 Dr. Roizen and Dr. Deborah Bryk-Serva, Pediatric Cardiologist, developed a research project to look at this issue. NADS provided some funding, and through our Parent Support Program we recruited more than 130 babies for the study. Participants were at least 3 months of age and had not been screened for heart disease with an echocardiogram. Each child in the study had a comprehensive physical exam as well as a cardiac evaluation, including an echocardiogram. Approximately 30% of these babies were found to have heart problems.
The results of this study clearly documented the need for all infants with Down syndrome to be evaluated by a Pediatric Cardiologist and an echocardiogram at birth or shortly thereafter – this is now clearly recommended in the Down Syndrome Health Care Guidelines.
Heart Study in Adults with Down Syndrome
When the Adult Down Syndrome Center opened in 1992, NADS developed an aerobics program for adults. Since very little research had been done on adults with Down syndrome, we provided funding to the Center to offer cardiac screenings for patients at the Center before they were allowed to participate in the aerobics program. This involved an evaluation by a cardiologist, a stress test and other cardiac assessments. No major cardiac problems were found in this study.
Energy Expenditure in Children with Down Syndrome
Amy Luke, Ph.D.
Nancy Roizen, MD
Marjorie Sutton, MS, RD
Dale Schoeller, Ph.D.
In 1989 Dr. Nancy Roizen asked NADS to recruit children for a study on nutrition and weight in children with Down syndrome, which was conducted at the University of Chicago Wyler Children’s Hospital and LaRabida Children’s Hospital in Chicago. This study was undertaken to examine the relationship between energy expenditure and obesity in children with Down syndrome in comparison with control subjects, and to provide data to help define daily energy requirements of prepubescent children with Down syndrome. NADS recruited children with Down syndrome, and a control group was recruited from another source.
A complete report on this study was published in the Journal of Pediatrics, Volume 125, Issue 5, Part 1, November 1994.