The Down Syndrome Debate

Nine years ago, at age 32, Josie and John Strickler welcomed their third daughter, Halie, into the world. Halie was born with Down syndrome, despite Josie’s relatively young age and healthy pregnancy. Typically, Down syndrome happens with older mothers and those low on folic acid during the first trimester of pregnancy.

Josie and John chose high-potency vitamin therapy for Halie in infancy and through childhood, so that she would grow up with milder facial and physical features and improved intellectual development.

“Halie today is going through typical nine-year-old things, such as deciding what she wants to wear and picking the colours for her room,” says Strickler. “Most people don’t pick up on the fact that she has Down syndrome. Halie is a confident little girl, sociable, with a lot of friends.”

Could vitamin supplements really account for the difference? Over the years, a small number of physicians and nonphysician clinicians have recommended vitamin supplements to correct some aspects of Down syndrome. Although the genetic defect that causes Down syndrome cannot be changed, compelling evidence shows that some of the biochemical processes can be greatly improved with good nutrition.

Leaders in Treating Down Syndrome

Vitamin therapy in Down syndrome began in 1959, when Henry Turkel, MD, of Detroit became interested in treating the metabolic disorders of Down syndrome with “U” series vitamins, a mixture of vitamins, minerals, fatty acids, digestive enzymes, lipotropic nutrients, an amino acid, and a number of drugs (thyroid hormone, antihistamines, nasal decongestants, and a diuretic). Conventional medicine ignored Turkel, and the US Food and Drug Administration allowed him to practise only in Michigan. He eventually retired, moved to Israel, and died in 1992.

When he was in his 80s, though, Turkel asked Jack Warner, MD, of San Juan Capistrano, California, to continue his clinical work on Down syndrome. Warner took Turkel’s original supplement recommendations and modified them as a vitamin-mineral formula called “high achievement potential capsules,” containing high dosages of dietary antioxidants like vitamins A, E, and C, and minerals zinc, copper, manganese, and selenium. Warner also established the nonprofit Warner House for treating Down syndrome and, like Turkel, kept exceptionally detailed records, including serial photographs, of the progress of his Down syndrome patients.

Before Warner’s death in 2003, Robert J. Thiel, PhD, NMD, began to methodically analyze patient records at Warner House. Thiel’s doctorate was in nutritional science, and his son had been born with Down syndrome three years earlier. Thiel seemed well-suited to carry the torch.

“In analyzing Warner’s patient records from a statistical standpoint–something no one had done before–I found that people who followed Warner’s nutritional protocol were of more normal height for their age,” Thiel says. “They also had less facial puffiness, less obvious eye folds, and a slightly more normal nose bridge, compared with untreated people with Down syndrome.”

Thiel, it should be noted, has financial ties to Doctors’ Research, Inc., a company selling supplements for Down syndrome.

Meanwhile, in Ottawa, Kent MacLeod, a respected pharmacist, developed an interest in Down syndrome in the early 1980s. Since then, he has focused on using nutritional supplements to treat Down syndrome. Today, MacLeod is clinical director of the Wellness Hospital, which includes a medical centre with a staff physician and psychiatrist, an analytical laboratory for measuring blood levels of vitamins and minerals, a small vitamin company, and a compounding pharmacy to customize vitamin, mineral, amino acid, and protein supplements. Virtually all of the Wellness Hospital’s activities are geared toward assessing and treating children with Down syndrome.

Although MacLeod’s clinic sells supplements formulated for children with Down syndrome, he’s not one to promise miracles to desperate parents. “Supplements can lead to major improvements,” MacLeod said. “They don’t change the genes, but they do improve their functioning. We know that nutritional intake influences intelligence and growth. Countless studies have shown this to be the case,” he explains. “If a kid doesn’t have normal blood levels of vitamin E, as an example, he should supplement so he has the same amount as an average kid. It’s as simple as that.”

Improved Quality of Life

Josie Strickler concedes that even with vitamin therapy Halie’s intellectual achievement is not “average,” but says that she’s not that far behind her school classmates either. “She’s very bright. She can memorize, and she started to read in January 2004. She’s good at dribbling a basketball, and she recently learned how to dance.”

Halie was asked to perform in a musical play in the Christian Youth Theatre, and she was so determined that she insisted on being in the first row on stage. She held her own during rigorous rehearsals. “The first night performance was amazing!” Josie says with a smile.

MacLeod is reluctant to make broad generalizations about how vitamin therapy might improve intelligence. “A five-point improvement in IQ might not seem like much, but in some individuals it has been as high as 15 to 20 points. It’s much more important, in my view, to look at functional improvements. Teachers often say that the children are more focused and organized, and better at speaking and writing.”

Improved Physical Health

Hazel White, who lives along England’s south coast, was 37 years old when she gave birth to Clara, her fourth child, in 1996. Doctors quickly discovered that Clara had Down syndrome, with two congenital holes in her heart that would require surgery. Nearly half of the children with Down syndrome have some form of congenital heart disease, reports the US National Institutes of Health.

White started giving Clara vitamin supplements at 10 months of age. “The differences were tremendous. I immediately noticed that she had fewer colds,” White says. Clara also started looking better–her hair, her skin.”

White decided to have Clara undergo blood tests at the Wellness Hospital in Ottawa. The tests identified several weak nutritional and biochemical pathways and high levels of lead, a cause of brain damage in children. The supplement program was adjusted to reduce lead levels. “Right after that, Clara had a big growth spurt and her speech really got better,” White says.

“Clara speaks very clearly for a child with Down syndrome,” says White. “She doesn’t look like the typical Down syndrome child. She’s tall and slim for her age–42 inches tall and weighing 50 pounds–not at all plump.”

Different Opinions

MacLeod points out that there is good evidence that supplements improve physical appearance and reduce infections in children with Down syndrome. The National Down Syndrome Congress disagrees. Says Dr. Mary Coleman, in an editorial published in the Down Syndrome Quarterly in 1997: “No study that adhered to even minimal scientific methods documented any definite improvement or even suggestive trends in intelligence, speech or language, neuromotor function, height, or health.”

In 2002, Michael Salman published a systematic review of the effect of therapeutic supplements in subjects with Down syndrome. He found “no positive evidence that any combination of drugs, vitamins, and minerals enhance either cognitive function or psychomotor development in people with Down syndrome.”

In 2004, the National Down Syndrome Congress published a position statement on vitamin and nutritional therapy in children with Down syndrome, stating that “To date, no vitamin or mineral nutritional supplement is known that will significantly alter the intelligence, physical characteristics, or behavioral features of Down syndrome.”

Yet the experiences White and Strickler have had with their Down syndrome children suggest some benefit from vitamin therapy. White is accepting and philosophical.

“We do have to spend more time with Clara. That’s true of any family dealing with a child with a disability,” she says. “In the process, though, we have learned a lot about health, and Clara is a delight for the whole family.”

What is Down Syndrome?

Caused by an extra chromosome, Down syndrome is one of the most common and most obvious types of developmental disabilities, occurring once in every 800 live births in Canada.

Down syndrome is a chromosomal arrangement that is present at conception. Normally, chromosomes come in pairs, but in Down syndrome a third copy of chromosome 21 alters the body’s genetic instructions and biochemistry. This origin explains the medical term for Down syndrome: trisomy 21.

People with the genetic defect have a characteristic look: a broad flat face, flattened nasal bridge, and upslanting eyelids. They may also face behavioural and medical challenges, ranging from cardiac anomalies to duodenal atresia, a congenital condition in which the first part of the small bowel has not developed properly. They are at increased risk for bone marrow disorders, including congenital leukemia and adult T-cell leukemia. The risk of Alzheimer disease is also increased.